Our Story

 The past 3 weeks have been spent in hospital with our precious treasure Henry. He was having a hard time holding his oxygen up. Henry has been through so much in 12 weeks of life he has had  6 echos, 6 EKG, 10 x rays , feeding study,  1 OHS, 2 ct scans I lost count of all the pokes, and 4 admissions..

 

This song was written by a fellow heart mom and she nailed it exactly what life is like. I don't think it will ever get easy. I have never had my heart break into so many piece yet held together by how much joy this tiny life brings me.  Many nights I would be up in my rocking chair at the hospital praying but my prayers are more like helpless pleas to the one who can heal him. It's funny how when your pregnant and people ask you " what do you want a boy or a girl?" and the answer is " doesn't matter as long as it's healthy." You know a baby who isn't healthy you want just the same.

 

 

After a week in our local hospital we were transferred to BC Children's Hospital by an air ambulance.

We were eight days at BCCH where many tests where done,  Henry was in heart failure, he had an upper GI study done which showed his milk going down the vocal cords into his lungs he was later diagnosed with Chronic Lung Disease he was aspirating his feeds and is now 100% NG tube fed, he has pulmonary hypertension which he is now on meds for. We were then transferred back to our local hospital where we spent another week. The days are emotion filled and from one hour to the next he is doing OK to not good.

Henry and Seamus are quite the ladies men charming every nurse that came in the room. I am so thankful each and every nurse that poured love onto my babies daily they really do become family. I am thankful for the friends that came in the evening and rocked Seamus to sleep so I could cuddle Henry, Dana, Kerri, Erin, Sarah, Heather, and to my friend Danielle that pumped her breast milk for Seamus for the 12 hours I was away from him during our transfer. My fellow heart mom Brandee that's been on the other end of the computer encouraging me cheering me on. Though we have only met once I am so thankful for her.
Although I never would have chose this life we are growing in huge ways. I think when we only have healthy kids we don't realise in the deepest way what a gift each day is.

My oldest four spending a whole week at Walmart selling
pop corn to raise money for all our trips and bills while Chris
is off work.  I have never felt so proud of them to see they truly
get what being a family is all about.  The praise from our community
has been overwhelming.

  Day 2 of being home now. It's actually really hard when you first come home.. It's really overwhelming to be home without the doctor just down the hall. It's such a mix of emotion thrilled to be a family under one roof again but sad cause it feels like your home more "broken" then you went in... And it's not how you wanted or envisioned going home. It's hard cause everyone expects you to be so happy yet you spent a lot of time worried.

 It will be OK we will find our groove and dance around the crazy amount of tubing.