Thursday, March 26, 2009

A step back in time

I found my picture box yesterday, before the digital camera age. I found baby pics of Jax, and I thought since I had so many new friends I would tell my story of having a DS baby.

We didn't know Jax had DS before he was born, they didn't even see his heart defect on ultrasound. But I will tell you he was a stinker before he was ever born. My first 3 pregnancies I never stopped working, I even danced up until I had them, but with Jax, my pregnancy was horrible. My iron was so low the entire pregnancy so I was always light headed and dizzy. At 35 weeks I went into the hospital in labor, but it went away so I went home. Then at 37 weeks, I got so sick, it wasn't the flu or anything, just a high fever that made it impossible for me to eat or drink. I think it was an infection, anyway, they gave me 6 bags a fluid and sent me home. The next day I went into labor. Needless to say, it was horrible. Besides the fact that I hadn't eaten or drank in a week, now I had to try and have a baby, huh. Then his heart rate would drop soo low, and I wasn't dilated all the way yet. So they tipped my bed so my head was way down, and started prepping me for C section. They were actually pulling my bed away from the wall when they checked me one last time and I was a 10, so we hurry and got him out (thankfully avoiding a c section) As soon as they put him on me I could tell he had DS. They took him and cleaned him up and then let me hold him just for a minute because he wasn't breathing great. While I was holding him I said, he looks downs. Of course the nurses didn't say anything, but after they took him away I told Ray I thought he had DS. That was Nov. 20, 2005

The nurse came back in and said that they usually like to have my doctor here to tell me this, but he had left, they said they thought he had down syndrome, and I said I know, I could already tell. That was it, no crying, nothing. I didn't care at all that he has DS.


I was very lucky because it was Sunday and my pediatrician just happened to be on that day. She said that he probably had heart defects because he wasn't able to hold his sats up. The funny thing was, I worked at the childrens hospital, with heart kids, so when she told me the defect I already knew what it was. I think I was very lucky that way. I didn't hit me as hard and didn't scare me as much because I see it every day. The next morning the life flight team took him to the childrens hospital NICU.

He did really well, he stayed for eight days. Had the billi lights for jaundice, and we tried to bottle feed him, but we knew he would be coming home with all the bells and whistles. I already knew how to place an NG tube, so Ray had to learn, and let me tell you, he was a pro, and he was so proud and bragged a lot that he could do it.

We brought him home Nov. 29, 2005, and he did really well at home for a month. He was home all of Dec. and we had a great Christmas. In January he went in for 10 days with RSV, and in Feb. he went in for 2 weeks with respitory distress and went back and forth to PICU. He was home all of March and we got in a Disneyland trip, little did we know that only 1 day after we got home our world would be turned upside down.

Are you in suspense? I will finish the story tomorrow, I don't want to take up to much space with one blog, but thats how we had Jax, our little angel here on earth.

14 comments:

The VW's said...

What a sweet picture of Jax!!! He IS such an angel!

Since our boys with DS have shared so much in common, it should be no surprise that their pregnancies sound very similiar as well! I was SO sick with Gavin and felt terrible the whole time I was pregnant with him...quite different than with our other boys. I went into labor a couple of times early on in the pregnancy and gave birth to him at 38 weeks.

We had no idea that he had DS or a heart defect. The ultrasound showed none of this. I too was not worried about having a child with DS, but was so sad that he had a heart defect!

How did you know how to place an NG tube before you had Jax? If you say that you are a nurse, I'm going to flip, because that would be way too much in common, since I am as well.(If you even are a nurse, but how else would you know about placing NG tubes before Jax?) I only worked as a nurse for one year after graduating from college and then decided to stay home with our boys instead, so I never really felt like a full fledged nurse, but it was definitely nice to have the basic background after we had Gavin! Things were a whole lot less stressful because of having some experience.

Sorry about this long comment! Can't wait to read about the rest of the story! I hate waiting by the way...I guess that I'll have to practice being patient while I wait eagerly for the rest of Jaxson's story! Have a great day!

The Mama said...

... man, I was just getting into the story! Thanks for sharing, can't wait for the continuance tomorrow. HEY JAXSON!

Cammie Heflin said...

This picture is gorgeous!

The VW's said...

Ha! I started out practicing on my dolls as well! I used to give my dolls injections too, except I used a sharpened pencil! I still have one of the dolls and she has a pencil hole in her forehead! Poor doll, I don't know why I gave her a shot in the head! How funny!

CNA's do most of the work anyway! When I worked I rarely used the CNA because I felt like they worked hard enough already! So, I just did everything myself when I had the time...I hate asking for help! (I'm not patient AND I'm a control freak! Habits I'm not proud of!)

Michelle said...

thanks for sharing that story...I am looking forward to part 2. Its good to read how it all happened for others.Similarities with our story but also differences. I LOVE the angel picture....fits him perfectly!

Travis said...

he is so cute. thanks for sharing your story I can't wait to hear the rest of the story
angie and mariah

Junior said...

Such a beautiful picture, Jax truly is an angel.

Anthony and Alyson said...

Thanks so much for sharing your story!!! I love how you kept calm during those ROUGH few days!! Little Jaxson is such a beautiful little miracle and he is so blessed to have you as a mommy and you are so luck to have him for a son!!

p.s. Thank you for being such a sweet friend to me and for your nice comments!! I truly appreciate you taking the time out to read our little story :0)

Stephanie said...

We had a similar experience, no idea about the DS or the heart defect (and it was a big one). My V was born early though, he was due right around Jax's b-day, but he came on Sept.11th. I couldn't avoid the C-Section, believe me we tried, but it was futile. His heart wanted nothing to do with the contractions, plus he had a diaphragmatic hernia we didn't know about either! I only got to see him for a moment before he was taken to the NICU. When they told me about the DS and the other issues I was high on morphine. They were wonderful though. It's funny that I never really had a problem with the DS either, so many Mom's talk about how they had to recover from the devastation of hearing the news (don't get me wrong.. we all deal in our own way), but I never really minded. I was more worried about his health.

The VW's said...

Yes, I remember baby Jessica. You are so funny, not weird like you said! But weird is good anyways, isn't it.....Well, I'm hoping it is! You've got me thinking back in time now.....Ah the good ol' days!

Our little family said...

I just stumbled upon your blog, and happened to see Jax's new wheels. We have a little girl with a birth defect, and she is not mobile at the age of 2. We hope that she will be mobile someday, but her PT thinks that is many years down the road. We do not feel like a full wheelchair is the answer. We're looking for a good stroller. Do you know the brand of the one you're getting for Jax? Is it from a medical supply company? I tried to email you, but couldn't find your email. If you could email me, I would really appreciate it. I believe you can access my email through my user name. Thank you! Are you part of the Utahkids group? It's a great group.

Anderson Family said...

I enjoyed reading part one of your story and am looking forward to part two. We didn't know with Carter about the DS before birth either - kind of a shock - but wouldn't trade him for anything. And my pregnancy was the worst - way worse than my other two pregnancies so I sympathize with you there. Maybe the rough pregnancy was to prepare us for what was in store later.....

Kristi

My Three Sons said...

I love that last picture of Jaxson. He is such a cutie. I just wanted you to know that we have had a sleep study, an EEG, and several other appointments as well as drawing blood and Thomas the Train blankie has been coming with us almost everywhere. Carson loves his blanket.

Thanks for keeping tabs on me and preparing to send out the troopers. I have been dealing with a lot and for some reason I just shut down.

Hope all is well with you guys and will be sending lots of prayers and good thoughts your way for a wonderful vacation.

Love,

Kaci and Carson

TUC said...

Love the angel pic! It is interesting to hear your story. It seems like hospital staff don't really know what to say in certain situations. Looking forward to part 2.

When I had my daughter nobody said anything at all about the Ds. A few hours after we were in recovery the NICU dr showed up and took her away "for observation" because one of her heart defects had been diagnosed prenatally. We knew the moment we saw her though and it didn't matter.

btw, I loved your chapter 1 montage so much I had to go make one of my own! (of course I cried the whole time I put it together, PTSD I guess)