Macey T's quilt   (Quilt Coming Soon)

Theme details

Hearts, Smiley Faces, Lightning Bolts, Flowers - Also handbags, roller-skating

Child Interests

Macey's favourite colour is pink.

She loves roller skating, dancing, make-up, perfume (her favourite is YSL Libre), bows, hearts, handbags and cats especially our cats Oreo and Nala.

Biography

Macey's heart condition was diagnosed at our 20 week scan. The sonographer could see a hole in her heart between the pumping chambers. We were then moved to the Birmingham Womens Hospital where it was discovered Macey actually had 2 holes in her heart and a coarctation of the aorta which was too narrow to work.

Born in Nov 2013 by emergency section, Macey was taken straight into NICU and put on drips until her transfer to Birmingham Childrens Hospital 2 days later.

At 5 days old Macey underwent her first open heart surgery which took 6 hours and handing her over was the most painful experience, not knowing whether we would see her alive again. Seeing her on PICU after, hooked up to over 20 drips, with IV lines, NG tubes, pacing wires and her chest left open was so hard. After a couple of days she had made no progress at all. Her surgeon and consultant decided to carry out a chest exploration to see what was going on. We left PICU while they did this. At 13:22 the phone rang asking us to return to PICU urgently as Macey was in cardiac arrest.

When we arrived at the doors of ICU, our cardiac liaison nurse met us and told us that during the chest exploration they discovered one of the stitches on her artery repair had been done too tightly and upon loosening it, it had burst causing a catastrophic bleed resulting in cardiac arrest. We were told to expect the worst. The amazing team worked on Macey performing her second open heart surgery at her cot in ICU for 5 hours, not once giving up. We were told, although critical, Macey was stable. Within just 2 weeks of all this happening we finally took our baby girl home.

In April 2014 Macey underwent a cardiac catheter to widen her artery again as it has begun to narrow a little. Since then she has gone from strength to strength. She is now 11 and has check ups every 2 years which include ECG’s and an echocardiogram. Now she is older she is a lot more aware of what gets said at her appointments and has unfortunately been diagnosed with anxiety. She has panic attacks quite often but we are learning to cope and deal with these better.

Macey is an absolute miracle and I am so so lucky she chose me as her mommy.