Our Little Sunshine's CDH Journey: he's EATING (well of a sort but still)

CDH

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies. The cause is not known.

Every CDH baby is different, there is no way to predict the outcome of any patient. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Thursday 4 November 2010

he's EATING (well of a sort but still)

we're going through another 'eating' phase, it started with choclate buttons, he was taking little bites of them and actually chewing and swallowing, NO gagging or choking on it in his mouth, he won't be fed and he's not putting everything into his mouth just select things, gave him a chocolate digestive the other day (just 1 of many things we just give him to 'play' with) but he decided he was going to bite pieces of it then spit them out, so even though technically he wasn't eating it we just say he was 'eating' it, this is huge.
still not eating likes of dinner when it's put to him, i usually just give him some of what we have to sit with but he NEVER puts it near his mouth and still isn't, but again today i gave him a plain biscuit and yep again he was biting pieces off it and then spitting them out, it's a start. let's just hope he keeps it up this time and nothing sets him back :)

It's his 1st birthday a week tomorrow OMG i can't believe it, our little sunshine will be a whole year old, this time last year i was sitting counting down the days to going in for induction, dreading it with every bone in my body, wishing i could just keep him safe inside me forever, terrified of losing him, not knowing what each day would bring and even knowing that he could be doing well 1 minute but doing really bad the next, terrified to start the rollercoaster ride, but look at him now, he's a wee superhero, an amazing fighter :) we couldn't be any more proud if we tried, yes he's behind with weight due to him having severe reflux for 8 months, behind with some other wee things but he's soooo bright and clever, he's defo been here before, he now has 6 teeth with i'd say another 4 on the way but he just takes it all in his stride, after everything he's been through a wee thing like teething isn't bothering him.

His vocabulary is amazing too he has soooo many words and can put a few together, just love him so much.

a wee update on the last post where i mentioned about the ectopic thing, well in the end it turned into a full blown rupture at home, i recognised the signs n got Ricky to ring in and tell them i was coming in, they said if i was still in pain in half an hour to go in, but i knew the score, told Ricky no tell them i'm coming NOW, so off we went, this is pain like no other, i'd go childbirth/c-sections any day to this. rushed to theatre where i'd lost a litre of blood into my abdomen and another litre during the operation, also sad to say i lost my left tube. then was told afterwards i would have been dead within half an hour if i hadn't gone in, so am very lucky to have recognised the signs and not listened to them saying come in half an hour.
we have an appointment with our consultant on the 11th so i'm hoping once i present him with ALL the facts he'll agree to push for genetic testing, not just cos of the ectopic, but because we've had 4 pregnancies in a row all have something wrong, 3 losses out of this. Also other reasons like family history with the heart problems, not my place to say too much but i've had 2 nieces born into heaven this year, both with severe problems, so there's a link, we just need answers.