I'm MAXED out

Hi all. I mentioned this on a comment, but I really need some help so I'm dedicated this post to it.
I don't know how to add more than 100 readers to my now private blog!
I have a list of people who want to read and I can't add them because it says I can only have 100. I've tried to go into settings, but I can't find where I can change it.
Can anyone help me?!?!?

On the mend?

I am going to slap myself if I just jinxed this. But since I know you have sent healing thoughts, I figured it would be nice if I thanked you for it.
Yesterday S only needed one neb treatment in the am...she didn't wheeze all day, the same was true for today. She did not need O2 at all while awake, and only needed between 100-200ccs while asleep, her norm. Her cough is MUCH better, and she ate well for breakfast and lunch today.
EJ did not have a fever yesterday or today, and was on his usual 100ccs of O2 minus the 3 hours off a day., and he did fine with both today and yesterday (he still has another hour to do today but I'm sure he'll do fine.)
I think I feel worse than the kids do, and I have the healthy lungs...go figure. But maybe this was just a quick respiratory cold. I've never heard of one this quick, but hey I'm not complaining! Keep those healing thoughts coming, we might get through this one this easily!

AGAIN!

We're sick...again! The kids and I have gotten sick every month this year, and I barely take them out. Am I bringing this home from work? Or was this one just a result of so many coming down with stuff...Daddy, our nurses, our EI worker, etc?
It started with a runny nose from Serena on Friday...I was hoping it would go away, my gut knew better.
It started to progress yesterday. Her cough always sounds awful because of her paralyzed vocal cord and her tracheomalsia. She is needing O2 while awake today and up to 300ccs while asleep and only satting 94% with that. She is very wheezy and is needing nebs every 3 hours today. You can tell she is uncomfortable, but hates Tylenol (and all oral meds...we usually put it in milk but I wanted to make sure she got it in her system right away and she wasn't wanting the bottle) and threw that up right after we gave it to her this am...she was able to keep down a repeat dose. Edwin had a fever this am and then again this afternoon. Both are more clingly than usual.
I started with the aches yesterday, and my chest feels tight, and my glands are swollen. I'm working but I wish I was home in bed. Thankfully our nurse is there with the kids so I can save my sick days for when we don't have nursing since Edwin's training is so intense now it's hard to rely on him for 6 straight hours (the number of hours I work a day 4 days a week.)
Also, they were suppose to have their NICU follow-up today. For the second time I had to reschedule that; last month because of the RSV/pneumonia and now this.

Please spring/summer get here soon!!!!

Happy Birthday to ME!

There is truly no better present than my family!


Poor Edwin was so tired from training and working 7-3. Even though it shows, it was nice to get a pic of us together on my birthday!




Serena would NOT smile! She didn't think Daddy was as funny as EJ did. He was literally dancing and sticking out his tongue, and still no smile from my Beanie.


My birthday dinner...YUM! (S&E loved it too!!)

And to top it off...

Edwin figured out how to get down from standing today!!!! Wow, we're on a gross motor spree over here!

SHE DID IT!!!!!

Serena JUST took 2 steps toward me (it's Friday Feb 22, 2008 and about 6:30pm)...real steps, not just falling forward and knowing I'd catch her steps. A step, pause and then another! All while keeping her balance standing straight up!
I am in tears and in shock! What an amazing sight!!!!!!!
I had to document the moment this happened. I'm back to see if she'll take some more!!!!!!!!!!!!!!!
Go SERENA!!!!!!

Here it goes AGAIN! When will there be balanced discussions?

Well apparently it was insulting that I asked you all what your perceptions/opinions of your NICU was. Someone who reads my blog emailed the author of TPE, and this is what she said,
"Stephanie, because emotions can be misinterpreted in blogs and because I received an email from one of your current readers (since your blog is now open only to who you choose to let in) about what was being said, I am going to choose not to respond to your comment."

My comment was to sum up *my opinion* of what I gathered from your input, without using names of course. I wanted to show that not everyone is bitter toward neonatology, and that with parental consent and parental input, people are more likely to have positive reactions toward neonatology and their children's lives. Here it is:

"FYI...I asked preemie moms who frequent my blog to share their experiences with NICU consult or lack there of, opinions of neos in their NICU, their perceived understanding for why as Drs they do what they do, how much they were or were not told about long term outcomes, their overall perception of neonatology and their particular NICU.

"Out of all 8 responses from babies born under 26 weeks gestation, (I'm only counting these respondents for this point), the overall consensus was they were informed of the long term outcomes, given the option of comfort care vs resuscitation (there were 3 who were born at 23 weeks, and all 3 of those parents were presented with the option of not resuscitating). A 24 weeker who went into full cariac arrest at birth was presented with the DNR option right away (our fellow NICU buddy) and every responder was grateful to neonatology for what they had done for their child. One responder, mom of a 26 weeker was not given options, and acknowledged it was because of his perceived gestational age even though he physically was responding more like a 23 weeker. In spite of this, she still expressed great thanks to neonatology and acknowledged the interest and desire of neos to still inquire how he is doing post-NICU.
Now granted this is only a handful of participants, however, I think this speaks for the changes that are going on in NICUs across the country.
With more informed consent and parental involvement in NICUs, I believe this is why we see parents with extremely premature children who see neonatology in a positive light. When a parent is aware of the possible outcomes and given an active role in treatment and decision making, I have seen a stark contrast in their perceptions of neonatology and the tone in which they speak about their child(ren), regardless of that particular child's health or development.
It's great to have research and studies, however, I think what speaks louder is looking at how things should and could be in NICUs, and noticing a similar trend in parental reaction to their child(ren) and what neonatology has done for their child(ren) when the parents were informed and their feelings/beliefs about treatment were respected."

I find it interesting that the author's most respected commenter called micropreemies "damaged fetuses whom nature meant to abort" (not from the post I highlighted, but another one months ago), but when I report that a handful of parents had a positive experience with the NICU, I'm somehow being insulting?
The question was raised about why neos do what they do? I answered it, and then got other's opinions. Those opinions are not welcomed, because they don't fit the tone that is constantly being projected on that site. Whenever someone comes in to try and paint a more balanced picture, things like her above response are issued.

I believe all NICUs should be family-centered, and that parents should have informed consent and be ACTIVE participants in their child's care. That's why I participant in discussions like this, because in spite of the statistics HH posts about people who are informed choosing not to resuscitate, I believe there are still plenty of parents who will choose resuscitation if given the option. Therefore, it is important that we look at how best to support these parents in their decisions. And after 24 or 25 weeks depending on which NICU, when the decision is not theirs to make, parents still need to feel comfortable with their neonatologists and nurses in the NICU. So why not share our perceptions and experiences in the hopes that one day we'll see all NICUs that mirror mine or others who were supportive, informative, and family-centered?
The other issue I have is new preemie parents easily find that blog through googling and blog rolls. I think it has A LOT of information. The problem is it is often sooo one sided. Don't we want to show all sides to a new preemie parent? This is why I *try* and get the positives across over there. As you can see it doesn't work out well.
So to the person who felt the need to email Stacy, what was wrong with the original post? And just in case the answer is my comment about being thankful my children are alive, (my "low blow"), there are 2 frequent commenters (not Stacy) who have repeatedly stated they believe their children would be better off dead, and this is *their* opinion, just like it is *my* opinion that my kids are not better off dead.

And here are some pictures to help illustrate why...









Oh, and my blog is private for reasons I've already mentioned. I had no issue questioning, debating, and bringing up what I disagreed with over at TPE when my blog wasn't private; so the underlying tone of me "hiding" something by only allowing YOU to read it is ridiculous.

Simple answer to why I'm thankful for neonatology...

Because they helped make this possible...my twins sitting together eating cinnamon toast crunch and watching Sesame Street. Sometimes, it's these simple things that mean so much!




Please feel free to continue to share your NICU impressions and opinion of neonatologists' motivation to save extremely preterm infants. I think it's a very valuable conversation.

the kids went to bed too early so it's time to raise some hell

Ok,
So as most of you know I have taken a break from The Preemie Experiment for the last couple months. I was personalizing things, being sensitive, oh, and going against the grain and being thankful my kids are alive...sorry low blow, but come on I told you all I got bored awake by myself and was raising hell! Anyway, the kids went to bed early and I had been alerted to the recent post by a fellow reader of TPE and was asked my opinion.
The post is entitled "First do no harm" and in it the author asks what the Dr's code "first do no harm" means when it comes to neonatology. So she writes, "Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?"

I don't think it's all such a mystery. And this was my comment (appropriate and hopefully not too controversial, although HH is on a research quoting spree, so who knows how this one will pan out...

I took a little respite from this blog but since I have twin very early preemies, and have often expressed my positive attitude toward neonatology, I was alerted to this post by a fellow blogger.
In our case we were CLEARLY given the option to chose resuscitation or not should we deliver that week (I went in to L&D at 23.2 weeks.) We were given a NICU consult and presented the option to resuscitate or not BEFORE delivery was imminent.
We were clearly told that some people choose not to initiate medical intervention to save their baby/ies because of the high mortality and morbitity rates. We were also told some people do choose resuscitation at 23 weeks, and some decide to discontinue care, while others decide to continue; and this was dependent on how the individual infant did in the NICU.
Although I didn't want to believe I would deliver that week, I did hear how devastating delivery at 23 weeks would be. I felt the neo was honest, and yet not completely doom and gloom.
Once in the NICU, it was CLEAR to me that every neo (yes we met with them all at one time or another in the 122 day stay) cared about the long term outcome of these extremely preterm infants. The developmental specialsit also cared deeply, and currently follows the twins in NICU follow-up clinic.
We had family meetings, I asked a lot of questions and participated in daily rounds with the neos and NPs. There was never a "conspiracy" to hide the truth from us. We had two very critically ill children, whose extreme prematurity would result in long term issues, although those issues could not be predicted during their NICU stay.
I believe that because our NICU was family-centered at its core, *most* families had an *easier* time understanding the implications of their decisions and their options, which many times at 23 weeks included discontinuing care; an option we were presented with, and seriously contemplated early into our 122 day stay.
I have shared the story here before of our fellow "pod family" who were strongly persuaded to end care for their very preterm, very critically ill, baby. I witnessed time and time again them try and have conversations with this family about how futile their efforts were, and were finally able to have the family consent to a DNR.
So, I really do believe there are NICUs and neos who truly care about quality of life, and will honor a family's decision for the extremely preterm or dying infant.
If every single extremely preterm infant had a life filled with suffering, I do not believe resuscitation of these infants would be permitted. Clearly there are children who have a good quality of life. I believe this is a reason neos save these babies. In our case, there is NOTHING evident that would make us second guess our decision to resuscitate and continue care. What's most important to us is they are not living a life of suffering, (although of course we are very happy that they are meeting their milestones!) There is nothing about their health or development that we believe would warrant them not to be alive. I believe neos know this to be true for families and this is why they resuscitate these babies.
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Am I the only one who had a good experience with neonatologists? Am I the only one who believes many neos care about their patients and the families and want people to go home with babies who will be loved and do well? Was everyone else lied to about the long term outcomes and forced to learn about it as it came or read about it in blogs? We were told the long term outcomes sooo many times, I finally striaght out told people, "we are aware of the possibilities in the future and have talked at length about parenting children with disabilities, but these are our children and we love them. You are doing a great job at telling us the truth here, so thanks for the info but please spread the word that we are informed and are very ok with our decision."
So give me your feedback. Let me know how you feel about neonatology and what the neos did for your children. Let me know if you think they did a good job explaining resuscitation/continuing/discontinuing care.

Thanks guys!

Some pictures

Guess who's cruising and took some steps while pushing his push toy?

MAAAUUUMMM! Serena is in my way and I'm trying to walk with my push toy!

Serena doing. "SOOOO BIG!"

I want that toy!

Look at my Beanie girl


I love my kiddos bums in jammies!!


Wrestling!

Look at that happy boy!

Weight update, Edwin's new word, and other stuff

We have a weight gain! Both S&E have gained a POUND since last month.
Serena weighs 20 lbs 2 1/2 oz!!! She is 29 1/8th inches long. Edwin weighs 20 lbs 12 oz!!! He is 30 3/8th inches long! I am thrilled with their weight gain, and hope they continue this trend. They had Synagis shots today and that's when we got their weights. They saw the pulmonologist Tuesday and we got the ok to take Edwin off O2 1 hour 3x a day now! We do this for 2 weeks, then off an additional hour for two more weeks, another hour off, etc. This is good progress for EJ and I finally see the light at the end of the O2 tunnel. While on O2 he is only at 100ccs still, and his sats are 98-99 consistently. His lungs are finally healing and growing strong!

And Mister Edwin has a new word which he said first on Wednesday...and it is..."MAMA!" And other variations, like "ma maum" and "maauuum." I am sooo excited, and he since he first said it Wed he says it 100000000 times a day. He also knows that I am "mama" and calls for me often. Sometimes when he's whiny it comes out "nana" and Serena says that too. It's very sweet, and I'm so proud that FINALLY both my kiddos say "mama." What a sweet Valentine's Day present.
Now if only Serena would have walked it would have been even cooler! She is too funny. She is super cautious about standing unassisted, and although is very proud of herself when she does it and is able to bend down and stand back up again, the idea of taking steps still freaks her out. She thinks about it, may take a half step, and then realizes it is much safer to bend down to a crawl and keep it on all fours. So she's close, and maybe she'll surprise us, but I think it's still weeks away before she takes off. This doesn't mean my baby girl isn't busy...because she is. She's into everything! She is super curious and inquisitive. One of my favorite things she does is tilt her head to try and see her brother if he is around a corner or partially blocked by someone. It's really funny to watch.
Anyway, if you haven't already check out the pictures from last night. They're some of my favorites of them lately. I especially love the one where Edwin is about to get out of sitting into a crawl with the sweet smile, and Serena's big smile while standing on Grammy's lap!
Like Jenn said in her comment on that post, they are getting SO big and are looking quite grown up! And trust me, they are acting quite "grown up" lately as well. I definitely have two playful, curious, sometimes trouble-making toddlers on my hands...and I couldn't be prouder and happier!!!

Valentine's Day night pics!

I have a lot to update you all on, but I want to spend some QT with my hunnie, so I'll do that tomorrow!
Enjoy the pj pics from tonight!

Another win for Daddy!

This is what they are talking about in the article. His opponent came forward and Daddy landed a hook/upper cut and knocked him to the canvas. See him getting ready to throw that power punch?



(Pictures of S&E below article)

Saturday, February 9, 2008
Local scores another TKO

Rodriguez goes to 2-0 as a pro

By Bud Barth TELEGRAM & GAZETTE STAFF
hbarth@telegram.com

BOSTON— At Thursday’s weigh-in, Fitzgerald Johnson tried to intimidate Worcester’s Edwin Rodriguez with an evil stare-down.

In the end, though, it was Rodriguez who did the staring down — at Johnson on the ring floor.

Rodriguez knocked down the game Johnson four times before finally putting him to rest with a giant right hand at 2:47 of the fourth and final round, scoring his second straight TKO as a pro before about 700 fans last night at The Castle at Park Plaza.


Johnson (1-3, 1 KO) came in with the reputation as something of a psycho, which perhaps explained his strange weigh-in behavior, which obviously was an attempt to rattle Rodriguez.

“I stared at him back and told him it was on, he better be ready,” said Rodriguez, now 2-0. “He was ready, but he wasn’t ready to be in there four rounds with me.”

After a first round devoted mostly to feeling each other out, Rodriguez dropped Johnson twice in the second round — the first time with a short right hook, almost an uppercut, as Johnson came charging in, and the second time with a textbook right cross that snapped Johnson’s head sideways and sent his mouthpiece flying out of the ring.

Rodriguez had bent over Johnson with a hard right to the body in the first round, drawing a painful grimace from his 22-year-old opponent.

The third round was more of the same. Rodriguez, also 22, took a punch and then dropped Johnson with a straight right hand. Soon after that, a left-hand body shot put Johnson down for a fourth time.

Rodriguez finally ended it in the fourth round with a big overhand right that sent Johnson to the canvas for a fifth time before the referee waved the fight finished.

To his credit, Rodriguez didn’t go crazy trying to make the kill after any of his knockdowns, choosing instead to box his opponent and wait for the openings.

“I knew that he was going to be a tough kid and that he wasn’t going to go down easy and stay down easy,” Rodriguez said. “So I just worked and the knockout came.”

The fact that Johnson kept getting up for more was what surprised Rodriguez the most, he said. “I was surprised because I hit him hard to the body and he was something, he kept getting up. I take my hat off to him.”

Rodriguez looked a little winded in the fourth round, having thrown a barrage of punches at the persistent Johnson.

“I was a little punched out, but I felt he was going down (again),” Rodriguez said. “I wanted to be 2-0 with two KOs, and I did it.”

The only disappointments for Rodriguez were that his fight didn’t make it onto the live Telefutura telecast because the two co-features both went the distance, and also because Oscar De La Hoya of Golden Boy Promotions, which was co-promoter of the card, didn’t show up as expected.

In the fight after Rodriguez’s, Worcester junior welterweight Jose Velasquez lost a four-round split decision to Lowell’s Sean Eklund. The scores were 40-37, 40-37 and 38-40.
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Breakfast with Daddy the morning after his win






They ate...strawberry banana french toast, eggs with toast, sausage, chocolate chip pancakes, and hashbrowns. I couldn't BELIEVE how much they ate! I wish I had some pictures of them digging in, but they were too busy whining for me to give them more I didn't have time to take out the camera!
Serena doesn't love sweets and wasn't too impressed with the chocolate milk, and preferred the hashbrowns over the pancakes. Edwin loved everything!