I’ve thought long and hard about my great comeback post and to tell you the truth I haven’t got one… but what I have got is one of those ’5 things’ kind of posts.
In the past 4 weeks my life has taken unimaginable twists. Things I would never have even considered have happened…
Rainbow (previously known as Baby Spot) arrived by emergency caesarean just over 3 weeks ago. The following day she was diagnosed with a Congenital Heart Defect, more specifically a Ventricular Septal Defect (VSD). Life has changed and we’re still only starting out on the heart journey, but Rainbow is my special heart baby.
5 Things My Heart Baby Has Taught Me.
- Fear of losing a child is far greater than everything else – Rainbow’s life outside started with an emergency section. It was my biggest pregnancy fear… up until I felt that fear of losing my baby. At that moment, I would have performed the caesarean on myself without any anaesthetic. What had terrified me until that moment was the greatest option in the world.
- Expect the unexpected – Life with a heart baby will never be the same again. Admittedly a VSD (Ventricular Septal Defect) is one of the better CHD’s to have, but life will mean hospital visits, worry (more than normal) and extra vigilance. Rainbow’s diagnosis happened within 2 hours of her baby check; a murmur was noted, an Echocardiogram was carried out and transitional care with NICU was started. But…
- Everything could always be worse – Rainbow’s initial diagnosis was Tetralogy of Fallot. ToF is a far more complicated CHD that requires definite surgery within the first 12 months of life where there is an Atrial Septal Defect, Ventricular Septal Defect and a narrowing of the pulmonary artery. A VSD only requires surgery if the baby is symptomatic. Rainbow is exhibiting symptoms but hopefully will improve as time goes on.
- Be flexible with feeding – I knew this in the most part anyway… but my little heart baby is struggling with rapid breathing… I say struggling but I mean that in the loosest sense of the word. She doesn’t appear to struggle but the extra breaths per minute tire her out somewhat. This makes feeding time a bit of a nightmare on occasions. She can polish off 3oz in 10 minutes, or struggle with 1oz in 30 minutes. I can’t feed her on the hoof… put it that way.
- Breastfeeding isn’t the be all and end all – I tied myself in knots trying to exclusively breastfeed with Comma… 12 hours after she was born, Rainbow still hadn’t latched on and, after a discussion with the midwife who admitted Rainbow wasn’t going to be a breastfeeder, I gave her a bottle of formula. I relaxed, Rainbow fed and all was okay. It doesn’t mean I feel any less sad but I made the right decision for us.
Heart babies are special… they prove to the world that they are fighters. They also prove that parents are stronger than can be imagined. At the moment we are still coming to terms with the fact that Rainbow has a VSD and that she does have symptoms (the majority are asymptomatic) but we wouldn’t have been sent anything we can’t cope with!