Monday, March 29, 2010

Big Day

Before I get to Gaines' big day, I just wanted to thank all of you who still read this blog...even if you just check in from time to time and especially for those of you who have prayed for Gaines and our family. Today's good report was due to your continued prayers. Reed and I visited Andalusia over the weekend and actually got "out" a little. I ran into so many people...some that I do not even know well...that would ask me how the zoo was, or if Gaines was crawling yet. I was just amazed at all the people that actually cared about my little boy and family and were still keeping up with us. I tell you, there are a lot of bad and crazy people in this world but for everyone of them, their are five good ones.

Moving on...

Our little Gaines has had a big day. He had a doctor's appointment in Birmingham today with his pulmonologist (more on that in a second) and when we got home this evening...he crawled! I cannot even begin to tell you how proud I am of him. As soon as I saw (and confirmed that he was actually doing know how I feel about giving him false credit) I got the biggest smile on my face. I have not been that excited in a while.

I know mothers are always proud of their kids' milestones but Gaines' are just extra sweet. There are so many things that we haven't been sure about for so long and to see him do something like crawl just makes me so happy. There is just no way to know if Gaines will have any sort of problems from his spells of not wanting to breathe correctly until he actually marks something off his milestone list. Let me clarify...he's not crawling marathons or anything, but he crawls a few little "steps" at a time. Beau got it on video...its at the end of this post. Also, I think he might be pulling up in the next few weeks. Things are just really starting to click for him and I could not be happier.

In medical news, Gaines had a great check-up today. We've been given permission to turn him down to a half liter on his oxygen. I'm waiting on him to go to sleep tonight before we do it. He's just still when he sleeps and we can get a good sat reading on him and really tell if he's handling it ok. Say a little prayer that it will go well.

The plan oxygen-wise is just to leave him at a half liter until his next appointment (in two months). Hopefully by then he'll have gained enough weight (he was 16 lbs 13 oz today) that we can cut his other two diuretics. Once he gets big enough, he'll have sort of outgrown them. I'm hoping that at his next appointment we can cut the diuretics and have a plan to wean oxygen over the next couple of weeks. They explained to me today how they will know when he is ready. I won't bore you with all of it but one part was by watching his carbon dioxide levels. At his first appointment his was at 39 and today it was at 33. When his is around 28, we'll know he's ready to go without oxygen. So...prayer requests, 1. Weight gain! We want to lose those diuretics. 2. Lower carbon dioxide levels and just all around lung development. All in all, his doctor only had great things to say and even commented on how well he was doing developmentally. A gold star appointment.

Oh, we've also gone to albuterol treatments as needed and not twice daily...yay! Hate it for you CVS.

On a more serious note...I never leave Children's Hospital without being thankful that we are only dealing with Gaines' lung issues...problems that will get better. There are so many kids at that hospital that would be grateful to have Gaines' problems. I mean, you see those little kids with bald heads and you know what they are there for and it just breaks your heart. Or kids in wheelchairs or you hear your doctor talk about his chronic ventilator patients. Everytime I'm in the parking deck there I think, everyone of these cars is here for a sick child...and that is just on one given day. Be thankful for healthy kids and please say a prayer for all of those that are not...and the ones dear to my heart, the ones who aren't born yet but are fighting to have a chance to try. Little ones like my Gaines who is not only trying but succeeding. Was that a little cheesy? Sorry...but he is. That little joker is a miracle.

Now...I hope you all appreciate the sacrifice I made for you tonight. I will wake up in the morning and my house will not be straight and no one's clothes will be picked out and I'll be rushing around with a little extra "my house is a wreck" stress but at least you all will be updated. Kidding of course...but my house really has been neglected tonight. Does my sarcasam come through or do I need to specify the kidding? Either way...

Oh...I turned Gaines down to a half liter and guess what? He's satting 99. Granted he's sleeping flat on his face which could account for a 99 but wow! Please pray that it continues.

Love to all,


Sunday, March 21, 2010

The Zoo: Pictures and a Video

Yesterday the weather in Montgomery was 70 degrees and sunny. A perfect day to be outside. So, we made our first venture out as a family. We all went to the Zoo. This was one of the first times we have taken Gaines anywhere other than the doctor. Certainly the first time we have gone anywhere as an entire family. It was pretty funny, as we were parking the car Reed said, "Gaines is gonna stay in the car". I guess Reed just isn't used to Gaines going anywhere with us. Anyway, all in all it was good day and it felt so normal to be able to all go somewhere together.

Below are two pictures from the Zoo and a video of Gaines attempting to crawl. He is so close...he will be scooting around the house soon.

Our Family at the Zoo

Reed at the Zoo

Gaines learning to Crawl

Wednesday, March 17, 2010

One Year Ago tomorrow it will have been one year since my water broke 900 miles from home and changed our whole world. I looked up some of our earlier posts just now and and I'm flooded with the memories. The posts that we made right after Gaines was born made my eyes sting. I guess the memories have faded but reading some of that brought it all back. I remembered how hard it was. How scary. How every day seemed like a week. How I just wanted to throw myself in the floor and give up some times. How I'd just cry and ask God why.

Its amazing what a year does.

Right after Gaines was born and was still fighting for the non-critical label, I wrote something about him opening his eyes and looking at us a few times. Now, that same baby looks at me and says "pllthtlth"(you know that noise) and laughs when I try and give him medicine or a bottle. Stinker. I tell you, Gaines is just so precious and I could not be prouder of how hard he's fought this past year. He's incredible. I just tear up when I think of all he's endured and pushed through the last year. Its been a looooong year but it could not have been more worth it. We have Gaines...and I know he's going to be fine. (I'll update more on Gaines later...I'm running out of battery).

We've been through the hardest year of our lives but we've come out ok. We have had incredible ups and downs the past year but we've made it. I would never ask to re-live this past year but I'm thankful for it. It has done so much for me and my family. We are stronger, we appreciate each other more, we take less for granted, we have more compassion for others...and I'm thankful for all of that. Thank you all so much for keeping up with us and praying for our family this last year. We love you for it.

Love to all,


Saturday, March 13, 2010

A Few New Pictures of the Boys

Below are a few pictures of our boys being silly. In the next couple of days we will try and post a video of Gaines attempting to crawl. Also, if you haven't logged on to our blog lately, there is a new post from Brittany below.

Friday, March 12, 2010

Good Excuse

I know its been awhile but I have a good excuse. Beau was out of town Sunday morning through Thursday afternoon so I've been a little occupied. My mom stayed with us and helped me with the boys for part of the time but it was still pretty busy around here. By the mom is awesome. She's always willing to help us out anyway she can. Lots of people are actually but the list is too mom just gets the credit right now because she just spent 3 nights with us.

Anyway...I was by myself Wednesday night with both boys and had a momentary lapse in judgement and decided to let the boys take a bath together. I figured...two birds with one stone. To say it was a disaster would be an understatement. We weren't 30 seconds in when Reed dumped a huge cup of water straight in Gaines' face. Of course Gaines screamed...and Reed got a spanking (he had just been told not to do it) so he screamed. Both of them were looking at me crying (Reed screaming "I want to get out!!!") and immediately I questioned my sanity for putting them both in the tub together. We made it through, but it wasn't pretty...and we won't be attemting that again for awhile. I told Beau later on the phone what I'd done and he said, "You did what?" Not my best idea.

Other than that things have pretty much just been rocking along. I had a cold last week which means Reed and Gaines had colds this week. We took Gaines in for a steroid shot/prescription yesterday just to get a head start on his cold. I think the key with him is just to not let the cold get ahead of you. He seems much better today thank goodness. We got the ok on Monday to discontinue Gaines' Lasix but I haven't done it yet. I want him to get over this cold first. I kind of feel like we'd be setting him up to fail if we did it right now. Please say a little prayer that he handles it.

In other news, our little Gaines is trying his best to start crawling. He gets on all fours and rocks back and forth. I even think he goes backwards a little bit. He has physical therapy again on Monday so please pray for another good report. He's really starting to be pretty fun...and he's definitely cute. He makes the funniest little faces. I tell him all the time that he's lucky he's so cute...especially when he's being a little "trying". Remember that fight that he had when he was born...fighting through all of is obstacles...yeah, he's still got it. Only now he fights taking his medicines, breathing treatments, leg stretches, etc. I'm trying to be thankful for it.

Reed has turned into quite the song bird lately. He was singing something about "way down yonder in the paw paw patch" in the tub the other night. I don't remember it but apparently its a classic. I must have been absent the day we learned that one because I don't believe I've ever heard it. He also sang our blessing tonight for us. Sweet boy.

I talked to Reed's teacher this week and asked how he was doing. She had all good things to say about him (obviously) and mentioned what a good eater he was. She went on to say, "he's messy...probably the messiest one, but he's a good eater". At least he's consistent...because he's pretty messy here too. Another teacher said this week that she wanted whatever I was feeding Reed because he just always had so much energy. I told her I thought that was just him being a little boy and she said, "Well, some boys are like that." Glad to know we ended up with one of the "active" ones. I wouldn't trade him for the world though. He has the sweetest spirit and is just always so joyful.

I guess that's about it for now. I haven't slept great the last few nights and it's my turn with Gaines tonight so wish me luck. I cannot tell you how badly I wish for a night of uninterrupted sleep.

Love to all,


P.S. And how about some comments? What's the deal with the lack of comments these days?

Tuesday, March 2, 2010

Answered Prayers

We’ve had a pretty good week this past week. Reed and I took a little trip to Andalusia over the weekend and I think we both gained about 12 pounds each. I’m sorry but my grandmother is one of the best cooks around. Not only does she cook delicious food but she cooks a LOT of it. We had a good time down there. Reed got to “drive” a few tractors which he loved. He’s the center of attention whenever he visits and he eats it up. Plus my sister was down there and that made it even better for him. I love being down there…it just makes me so thankful for my family. I can’t wait to be able to take Gaines.

Gaines by the way has been doing awesome on ¾ of a liter and we actually noticed last night that he somehow had gotten bumped down to a half liter. And wouldn’t you know that little joker was handling it fine! Beau was fiddling with the concentrator (turns room air into oxygen) and noticed that Gaines was only getting a half liter of oxygen. Now, a few weeks ago I wouldn’t have put it past myself to “accidentally” turn him down and ask the doctor if it was ok after the fact, but we really and truly have no idea how that happened, or how long its been like that. Now that we are actually in the process of weaning I’m a lot more patient with the process so I’m fine with going slow. We debated about whether or not to leave him alone or to put him back to ¾ and finally decided to go back to ¾. Only because we reduced his Lasix yesterday too and we didn’t want to push too much on him too fast. The good news is, when the time comes to cut his oxygen to a half liter, we are pretty confident that he’ll be able to handle it. And you can be sure that next Monday, once we are sure he’s handling the cut in Lasix, I’ll be on the phone with the doctor asking for the next step. How exciting for Gaines!

In other positive Gaines news, he had physical therapy yesterday and got what I think was a great report. His therapist was very pleased with the progress in his sitting and gave us some tips on helping him learn to crawl. She felt like he’d be crawling in the next month or two. We think it could be sooner than that. You can see it in his little eyes that he’s trying to figure out how to get his legs under him. Also, she was very pleased with the improvement in his legs and gave them an 8.5. Not quite the 9 I was hoping for but definite improvement. She told me that she “definitely saw walking in his future”. I was so glad to hear that! She said that at this point she couldn’t promise that it would be without a limp or something but until now we haven’t had a vote of confidence like that in the walking department.

Now, she felt like he wouldn’t be walking until September at the earliest and said that it could be next spring but that it would happen. She based that on the fact that she thinks he’s about 2 months behind his corrected age (which is 8 months…so she thinks he’s about a 6 month old right now…and p.s., according to my figuring that’s a little conservative…I’d put him at about 7 months but that’s just me) and that on average kids walk around one year (some earlier, some later) so that would mean 2 months after his due date of July 7 which is September. Now, the reason that I’m ok with that is this. They base preemies’ adjusted age on their due date which is about the time most preemies leave the NICU (their due date)…Gaines didn’t leave the NICU until 2 months after his due date. I just really don’t think that’s a coincidence. While the nurses held him and loved on him as much as they could (as did we on our visits), it’s just not the same stimulation, etc that he would have gotten if he’d been at home in July. Plus he’s progressing at a consistent rate so I’m happy with it.

AND…then there was this part. The therapist was showing us some new moves to do with Gaines to help with his balance when standing. She was explaining that when you lean him forward he should get on his tip toes to balance and that when you lean him back wards, he should flex or lift his toes off the floor. When she saw him do the toe flex business she was really excited for him and said that seeing that, she could give me even more confidence on the walking. She said that it showed his front calf/shin muscle (whatever it’s called) was working. She said that muscle was very hard to stimulate and that the kids who couldn’t really use theirs were the kids you see in leg braces…and Gaines can use his!

If you don’t believe that all of this is God answering prayers…then I don’t know what…I’ll have to call you crazy. I mean, Gaines should not be here and here he is weaning oxygen and medicines like a champ and making steady progress on his development. Every night I pray that God will make Gaines an example of His faithfulness, mercy and compassion and that people will see a complete miracle from Him in Gaines. I pray that Gaines will grow up to be as smart, active and verbal as his big brother. Getting these good reports just fills my heart with joy. Please keep him in your prayers as we continue down this road.

Love to all,