Sunday, March 11, 2007

Random post at 5am

Hello all. Well it's a little after 5am and I debating whether or not to go to sleep. I know Champ will be awake soon and Beana jsut went to sleep after taking more of her bottle! I guess I am pretty lucky when it comes to feeding these little ones. They are really good eaters, especially considering long periods of intubation. On average Champ takes between 3-4 ounces every 3-4 hours, however will usually have at least one period in the day when he takes a larger volume, say like 5 ounces. Serena is so hard to pin down. Sometimes she'll only take 2 ounces, but has been known to take 7 over an hour span. Her average is about 3-3 1/2 as well, but like her brother will do some bigger volumes. Like now, she started eating at 4:15, I thought she was done, changed her diaper, changed her outfit (too drooly) and she was WIDE awake and eating her fists, something she does when she is hungry. So more bottle for Beana took 4 1/2 since 4:15.
In other news, neither one has repeated their smiles, which kinda bummed me out, but they are so into staring at Edwin and I which makes me happy. It's amazing. Sometimes I get this panic that maybe they can't really see and it's all in our heads (they both had laser surgery for ROP and the opthamologist can't confirm what their vision is until they get a little older...no retinal detachment or anything which is good), but I am pretty sure they can see because they track objects and they look to our voices, which I guess confirms they can hear too even though they haven't done too well at the audiology appointments. ::sigh:: Mom of micropreemie stuff....
In other other news, I went to my brother's 4th birthday party yesterday. No, that wasn't a mistype, I do have a 4 year old brother, and no, I am not a 13 year old mother, I'm 24 thanks. haha. He is my half brother, and he is a doll. Edwin, Sr stayed home with the kiddos and I headed out for 2 hours of swimming, (indoor pool obviously), crafts, cake, presents, and John Dear (the theme of Ethan's Bday). It was fun and the kids were so cute, aren't they all? I couldn't help but think about Serena and Edwin's birthday parties, which of course led to a semi-panic attack because I became scared and paranoid that what if they were teased and kids were mean and no one came to their party? I need to stop obsessing, I think it's hormonal.
Sometimes I wonder if it would be better if I were naive. Edwin Sr is really amazing, especially in his optimism concerning the twins. I often wonder if it is a result of his true faith they will be okay, him trying to make me feel better, or his ignorance about micropreemies, and I say that in a nice way. It's not that he doesn't care or can't read, he just doesn't read and I don't think would fully grasp everything even if he did. First off, English is his second language. He wasn't born in the United States, and even though he quickly transitioned to English speaking classes from bilingual as a teen, Spanish was the language spoken at home, and it wasn't until we started dating that he ever spoke English on a daily basis (his family owns a store mostly catered to Spanish-speaking customers, his boxing coach speaks Spanish to him most times, especially if he is fighting an English speaking fighter, and all of his close friends speak Spanish). Neadless to say, throughout the NICU days and even still, I am really the one who talks to the Drs about the twins, works with the nursing staff agency, O2 company, EI, and the like. I don't mind of course, but in a sense I wonder if Edwin is more at ease and enjoys the twins more than I do because he doesn't read up on micropreemies? Even in the NICU he always swore everything would be fine. When they asked us to start considering taking Champ off support, that he didn't have a shot in hell, Edwin was the one who told me they were wrong. He wasn't completely naive, in fact, this is hard for me to admit now, but we seriously talked about ending support especially since we couldn't get him off the oscillator and his settings were increasing up until the day he hit 28 days and was given dexamethazone. We both agreed we wouldn't get his PDA ligated if he didn't respond to the steroids, our son's last days would not be spent having heart surgery out in Boston. He would be held by our family and be pain-free. But I digress, he did respond and he defined all odds, and he proved Daddy right, which is what he says to me everytime I bark off statistics concerning outcomes. Here is a typical conversation in the Rodriguez home:
::Stephie (as Edwin lovingly refers to me as) is crying about the what ifs::
Edwin: "Stephie, what percent chance of survival did they tell us the twins had when they first came down to the hospital room before they were born?" (side note I was 23 and 2 that day) "I don't know Edwin." "Tell me, what was it?" "Like 50 or 60 percent if I got 48 hours worth of steroid shots before their birth." (side note: our NICU had pretty good stats on 23 weekers even though they brought old stats and only 2 were born that year, we found out later that they usually do better than the national average). "And Stephie, what did they say about Edwin when he was 3 1/2 weeks old?" "That he had 'close to a zero percent chance of survival and it would be nothing short of a miracle if he survived.'" "Exactly. They are strong, and they are fighters like their Daddy and they are going to be fine."
I kinda like that whole way of thinking but it's just not me. I wonder if life would be easier if it was?
I know one thing, I'll continue to research and do what's right for Serena and Edwin, we are so lucky we have received support since day one from developmental specialists, and were involved with EI even before the twins discharge. We can have the twins be seen weekly, biweekly, monthly, whatever we want. Our EI worker was a NICU nurse, has her own triplets, has done a lot fof work with micropreemies, and is super nice. We also have access to OT, PT, Speech therapy and the like as soon as it is needed. I guess we're lucky to have such great resources, especially from reading other blogs.
Anyway, I am way too overtired to be typing and I bet when I reread this tomorrow, I will be like okay Steph, this makes zero sense and is a complete rambling session...but isn't that partly why we all write? Thanks for the therapy session...I'm off to double check on the love bugs and hop into bed for 2 hours!

4 comments:

Shannon said...

Oh the joys of being a mommy to a micropreemie, in your case two! I have to say that what you think and feel is totally a mom thing. I have come to learn this over the past 21months with Ashton.

When you describe Edwin it is exactly the way Jeff was as well. So positive. I remember a few times I was actually upset with Jeff because he didn't seem to be upset when bad things were going on or when we were told that Ashton probably wouldn't make it through the night. However looking back, it was just his way of dealing with it and keeping me as strong as I could be.

As for you dealing with everything now, it is the same thing here. Of course I was the one who took on everything full force anyways, but it does get frustrating at times. I sometimes fell that I am a single mom with all I deal with.

Jeff doesn't read or research anything either. He learns everything from me! LOL That too can get frustrating especially now since we are dealing with so many different issues.

And finally, the thoughts that go through your head about the kids futures. I worry constantly about school, how he will be treated, if he will have friends....it doesn't end. But you know, I had a therapist say to me that even if Ashton was term and "normal" I would still worry about those things and it is true. It is the mommy's job to worry!

You are doing a great job! I check on these two little cuties all of the time.

Stay strong and hey, they will start smiling at you soon! :)

Miracles said...

I agree totally with Shannon. Just being a mom makes you worry.

When I was pregnant with the girl's I constantly worried about their health. I never once worried too much about prematurity. I always knew they would come early, but I never really focused too much on the problems of them being early until of course they were all of a sudden here 3 months too soon. Even at that point my mind was so focused on them just surviving another day that I had a hard time focusing on their futures.

It wasn't until the docs sat us down and told us what the outcome could be that I freaked out. But I honestly have to say, I had a rough couple of weeks and then I figured I could do one of two things, I could sit around and worry forever about "what if's" or I could research all the different scenerios and be able to deal with things as they happened.

I tried not to read too much of the negative reports. I tried to focus more on how to raise a child with certain special needs. For me this worked.

Ever since the girl's came home I have always said that whatever obstacles were put in front of me I would face head on. I am just so thankful they are alive.

As far as their future goes, and other children, don't worry too much. Hopefully the twins will be surrounded by people who have taught their children that everyone is the same.

I can honestly say that I am thankful in some ways for the preemie experience. I look at it as one of my greatest learning experiences so far.

As for the husbands- they are all the same. Their have been many times I could have taken Brian and just shaken him! I think they do worry they just don't show it like we do. There has been many times that Brian has come to me months later and told me how he worried about certain things but was afraid to tell me. Their men! they hold it all in. I don't think that will ever change.

Good Luck & stay strong. You have a long road ahead of you, just try to stay positive. Even if a negative is thrown your way, it's not a bad thing. You will start to see as the months go on how strong of a person you become.

Sarah Furlough said...

I know I worry constantly about Cooper, and I am sure I will until the day I die. When I get bogged down in the "what-ifs," I look at him smiling and I know no matter what- I will always love him.

No matter what the future may hold for your sweet babies, you have so much love to give them. I believe that makes all the difference in the world.

You are doing a great job- keep it up!

PS: My husband Scott is the same way as Edwin, Sr. He is always positive- I think that it has really helped me through some very tough times.

abby said...

Stephanie,

You're a great mom and the kids are beautiful. Everyone copes in their own personal way, and yours is by doing research and Edwin Sr's is by remaining optimistic and just dealing with the day to day stuff. But it's obvious that the two of you are great parents and that the kids are really lucky to have you as advocates and, more importantly, as parents who love them.

Don't worry about other kids: the twins will be fine. Yes, it's true that kids can be cruel, but often they are cruel for no particular reason, and it's important to live in the moment (enjoy their stares and yes, they will smile at you guys again) and not get too far ahead of things. Enjoy them as babies. They are amazing and precious and you guys are a great family.