Saturday, September 26, 2009

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 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,



Grammy Jane said...

Glad to hear you're nearing normal. Reed and Gaines are such cuties!! I go by my middle name and it has caused a few problems, but not so many as to switch. Your boys will be fine. It's really no worse than being called "Bill" when your first name is William. Have a restful Sunday!

April said...

It sounds like things are getting better and better!! The whole family is in ou prayers!!!

Our son, DJ is short for Danny Jr. I didn't want him to be Little Danny for the rest of his life (he has a cousin that is Little Ronnie and is in his 40's) and I didn't want him to be Jr. also. Daniel is so formal so we chose DJ. The funny thing is now with some teachers at school, he has changed his name to Daniel. It sometimes causes problems, but people just need to learn to fix it!!!!!

Stay healthy!!

Danny and April Hadden

angie b said...

You sound so happy now, and I'm so glad to hear it in your blogs. You've had quite a load for many months now, but I'm sure it's molded you into a stronger young woman. May God continue to bless you and your family! Angie Sasser

Thomas and Jamie said...

You sound SO upbeat and it sounds SO good!! Your babies are both doing great! (TAKE SOME CREDIT! Of course, give the glory to God as you always do...but, you and Beau are doing a wonderful job too!)
BTW - I have a Thomas "Malachi" and sometimes at his doctors appointments it's a pain. BUT, for the most part it's not a big deal! I LOVE the names!

kim_brough said...

'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.' You sound like my kind of woman! Ha ha.

Do you all have any state funded programs like First Steps where PT, OT, ST will come into the house? KY has that until age 3. Maybe that's what you're using, but I'm not sure.

I go by my middle name. Don't get me wrong, I was named after both grandmothers and love my entire name, but I canNOT wait to get married and get rid of the first name all together!

maddie/cadesmimi said...

I am so glad to hear things sounding pretty "normal" in your household. It's wonderful, after all of the ups and downs that you all have been through. Life with children is never 100% normal anyway--we just learn to go with the flow. LOL Kathy in GA

Katie said...

So glad you guys are doing well and enjoying your new normal!

Sounds like Gaines enjoys being home and Reed is pulling out all the stops (counting to 10, wow!) to keep up with little bro.

My name is a nickname to my middle name... confuses people all the time, but I rather enjoy it. I feel like I have an alias. :) J. Reed Daniel and T. Gaines Daniel sound so distinguished.

K, D, and J

Kelsey said...

I am not sure if I have ever commented but I have been reading your story since you were on bedrest in the hospital. I am so happy that Gaines is doing well at home and that you all can enjoy being with each other again. And Yay for his weight gain!