LisaNM

There's a link on the preemie group to a stay about a preemie, Kayleigh Anne Freeman (http:kayleighannefreeman.blogspot.com). She was born 3 months early and went through a lot and is now in heaven. I feel so bad for her family... and ashamed of myself for complaining. I took this from Kayleigh's blog, the surgeries and procedures she had:

Surgeries:

ROP Stage 3 - Eye Surgery
Gastrointestinal Surgery - Bowels
VSD Repair Surgery - Open Heart
Tracheostomy Surgery - Airways
G-tube Surgery - Feeding Tube
Nissen Surgery - Stomach
Bilateral Hernia Repair Surgery - Groin

Procedure:

10+ Blood Transfusions
Skin Biopsy - Chromosomal Studies
Rectal Biopsy - Hirschsprungs Disease
Intestinal Biopsy - motility
Heart Catherization - Pulmonary pressures
(3) Central Line placements
Pepcin Test - aspirations
Impedence Study - reflux
(2) Upper Gastrointestinal Studies - motility
(2) Lower Gastrointestinal Studies - motility
15+ PCVC Line Placements - long term IV's
10+ Blood Culture Tests - for infections
200+ Blood Gas Tests - Pin pricks to her toes

DS had all the procedures mentioned. Each and every one. Well, not as many line placements or blood gas pricks because he was in the NICU only 5 months compared to Kayleigh's 10, but still...

He didn't have the open heart VSD surgery or the Nissen or a trach as far as surgeries go, but he did have the Stage 3 ROP lazer surgery and a g-tube. He actually had 2 major bowel surgeries and 1 more eye surgery by the time he left the NICU, and had 2 more eye surgeries after that. He still has the inguinal hernia, since no one is ready to go in, partly because it's not causing problems, and partly because of the lingering pulmonary hypertension issues.

So I finally find someone who knows what we went through in the NICU, but I can't be of any comfort to them. Seriously, what would I say? I went through pretty much everything you did... only DS survived? This family's story was on The Doctors, and they're asking for stories, but what should we do? Send the pictures and medical records and have ped and the neos write in, and then send a video of DS laughing like a loon and blowing raspberries and trying to sing along with Rolie Polie Olie and the Great Defender of Fun, and then drinking Pediasure from a cup and turning around and handing the cup to the dog (which he just did a few minutes ago)?

We know how blessed we are that DS survived at all and we thank God daily. We do often wonder "Why us" because it's still hard, but losing a child is even harder. Our thoughts and prayers are with Kayleigh's family. I feel guilty though...