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Jackson's Heart
.:::..:...... .::::
Jessica [userpic]
Big guy


Jackson had his first physical therapy session today. It was a bit too much for the little guy. They showed Sara some range of motion stuff we can do with him and gave him a special little chair to help him hold his head up.

We had him at the doctor on Tuesday and he weighed 13.4 lbs.

Sara will be going down to Milwaukee on Friday for a checkup with the cardiologist. I'll send more info if we learn anything new.

Take care and have a great weekend.

Jake and Sara

our baby due to be born march 2007, with HLHS

My name is Susan and I live in a subarb near Chicago, my husband and I just recently found out that our son will be born with HLHS. We are reaching out to other family's with the same situation as us. And I stumbaled over your website. So far I have been in touch woth one other family, however they live in Atlanta. I am interested in chatting with you, since your exsperiance is so new, and you little one has had the first of the norwood so soon. Our son is due in the 2nd week of march and he too will have his first surguary 1 week after at Children's Memorial in Chicago. Please if you are interested we have also created a Website for our son and that is:
www.adambrodersen.com. where I have as well put updates in. if you are interested in contacting me please e-mail me at susanb3675@yahoo.com. I look forward to keeping up with you and your baby's progress.


My name is Melissa. I am writting to offer support and tell you that there is a light at the end of the tunnel.
My son was born early weighing 3lbs. 8 oz. ... flight for lifed immediately to childrens after birth. I never got to see him or hold him before they whisked him away for his very first helicopter ride without me.
when I was pregnant they diagnosed my unborn child with Hypoplastic Left Heart Syndrome. When he really had Total Anomalous Pulmonary Venus Return (All four of his pulmonary veins were connected to the wrong side of the heart) along with and Atrial Septal Defect, & Ventrical Septal Defect. He under went 2 heart surgeries. He spent the first 4 1/2 months of his life at Childrens between the NICU and PICU. Came home on a pulse-Ox monitor, apnea monitor, oxygen, feeding tubes, suction machine... the works. Since then we've been back and forth to Childrens because he gets sick so easily.
He's been getting healthier though. Day by day. We were able to wean him off his oxygen and he now only needs to have it on at night along with his apnea monitor. He has stayed home from the hospital the longest over the past month and a half.
The road you have to look forward too is going to be hard. Harder than it was for me. The mothers I met in the NICU have made my experience so much easier. One mother of a child with Hypo Left syndrome, has been stressed. I feel for you. I'm here for support if you need someone to talk too and understand what you're going through. I wish I could offer you more but like you, We are paying hospital bills and all my regular bills too. I'll send what I can. It takes a toll on the family. Between having to drive back and forth to home to keep up your regular life, staying in milwaukee to be close to your child, and working on the chances that you can. Making sure someone is always with your child, dad, grandma, just someone so they aren't alone while you go take a shower or do laundry, everyday stuff you took forgranted before... and wish you could just sit down and not worry about anything!

Just know, there is hope! And one day you'll look back on this all and not believe how you ever made it through.

Us mothers have to stick together, Us heart families have to stick together!

I have to run now,

Good Luck to you... I know the seats your sitting in! It does get better, I promise.