Comments on: Def Leper.

By: Dani

Dani — Mon, 14 Apr 2008 02:12:43 +0000

The new site is great. The baby and husband look adorable.
Consider that stage I and II ROP is better than most. And thankfully that’s why they look for it now so that it can be taken care of earlier. Our nurses told us to go away when they tested Jeffrey. I believe they said it wouldn’t be too bad for him but that it would terrorize me.
Sorry to hear about the MRSA. At least the NICU doesnt’ sound too concerned. I worry when the nurses look worried.
We’ll definitely be looking in on Emily. They definitely have bigger things to be worrying about now.
Lastly, we may be the weirdest parents in the world but the NICU almost made us more calm. I don’t mean that we didn’t worry but the first time he fell and his mouth was bleeding? He was conscious and alert. The first time he had a fever? Motrin and Tylenol and a few calls to the pediatrician. It seemed to us like once we watched our baby quit breathing? Things like falling and cuts and bruises just didn’t seem like as big of a deal. I think it made us feel like we could handle bigger stuff as parents.

By: Ariel

Ariel — Sun, 13 Apr 2008 20:41:17 +0000

Your new site is lovely, but your baby is even lovelier. I hope I didn’t just make that word up. It doesn’t look right.

Simone is just the cutest little girl ever :)

By: jaymie

jaymie — Sun, 13 Apr 2008 05:16:59 +0000

Hi from a lurker! I’ve read often but just not ever had much to say….

However, I’ve got this almost 13-year-old former preemie…you have to remember that when he was born 28 weeks was the big goal versus the current 24 weeks…. The night he was born (at 7:55 PM) a nurse came in to my recovery room and asked me if I had gotten any pictures of him because they weren’t sure he would make it. I will NEVER forget that feeling I had when she asked me that question.

Today he is a happy, healthy (and VERY tall) pre-teen who has no sign of his ‘former’ life except for the chest tube and PDA repair scars. However, I STILL cringe each time he says he doesn’t feel well or coughs.

You’ll never feel safe, but you’ll adjust to a new ’safe’ with Simone. Unfortunately, you’ve joined those of us who have walked down that path that teaches us that our children are vulnerable always….no matter what they do or what we do.

By the way, thank you for introducing us to Emily in your post. Emily was diagnosed and treated where my above mentioned son, Zachary, was born. (Memorial Medical Center, Savannah, GA)

Best wishes and continued prayers for you and your family. Please always remember that your path is totally unique because you are the one who is living it right now….but never forget those who have made the journey before you are standing at the finish line watching your race, remembering those feelings and waiting for you to join us….so that, someday, you can cheer others on as well.

By: nycreb

nycreb — Sun, 13 Apr 2008 01:44:23 +0000

De-lurking to say, up your goal for the walkathon, girl! congrats on your beautiful baby, may she continue to grow and thrive.

By: Marti (From Michigan

Marti (From Michigan — Sat, 12 Apr 2008 18:58:41 +0000

Whoops that was supposed to be innocent precious preemies! My bad!!!

By: Marti (From Michigan

Marti (From Michigan — Sat, 12 Apr 2008 18:57:43 +0000

There is a TON of information about MRSA colonization on Google. I just read where nearly 100% of the time, this gets spread because the medical personnel in the NICU DID NOT follow hand washing techniques. If I were you Alexa and Scott, I would remind every single nurse, doctor, aide, etc, to wash their hands before touching Simone starting right now! You have that right as Simone’s parents. Just Google “MRSA colonization in premature babies”, and a ton of information comes up – some which you may not want to read.

Such a simple procedure such as washing their hands would help keep this awful “bug” away from innocent previous preemies.

I continue to pray for all of you. =)

By: JLS

JLS — Sat, 12 Apr 2008 18:13:30 +0000

Sick, well, premature, right on time, infant, teen- didn’t you get the Mom memo? The constant fear and fret will forever be a part of your being… it’s just that the laughter, silly songs and the hugs make it all a bit easier. Thanks for introducing us to Emily. God bless her family, too…

By: Kathy Ramsey

Kathy Ramsey — Sat, 12 Apr 2008 15:28:45 +0000

Your writing style is wonderful and witty. My daughter was born at 26 wks 3 days and was in the NICU for about 110 days. We kept getting knocked over by bad news after little bits of good news here and there. She was very sick in the hospital most of the time and wasn’t all that healthy when she finally came home. (Oh, and we went through the staph infection isolation too, and I know what you mean when you say you feel like defending Simone. My husband called it “The Plague Room.”) My daughter is now almost 3 and totally normal. Whip smart and speaking in complete sentences. The outcome has been shockingly good. But I still worry and fret and wring my hands. It’s totally normal and that worry will never completely go away, but it won’t constantly hurt like a huge weight on your chest.

By: Patty

Patty — Sat, 12 Apr 2008 04:48:02 +0000

Even the word “colony” is unappetizing, isn’t it? Poor baby girl. I’m so sorry you had to see the eye exam!

LOVE LOVE LOVE the picture. And the redesign rocks as well.

Always in my prayers, Alexa.

By: Sara

Sara — Fri, 11 Apr 2008 22:42:51 +0000

I dig the redesign, and Simone, and Scott’s glasses. Those are some hardcore emo glasses of destiny, yo.

And I’m glad that Simone’s troubles are becoming more manageable — I know it’s still very hard to feel optimistic, but there’s definite, real progression in these entries, and it’s wonderful to see. You’re going to have that baby girl home with you in no time, and you are going to rock the mommy thing even harder than you already are.