Our Little Sunshine's CDH Journey: 36+2 todays scan etc

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 22 October 2009

36+2 todays scan etc

scan today went as 'well' as always, along with the MRI results showing still stomach and bowels up in his chest with liver DOWN, LHR in at 2.2, fluid levels are now higher than normal so been told any niggles at all have to go in and checked out and to go back to glasgow in a week to check the levels again to make sure they're not rising too fast. oh and EFW is 6lb 12oz

Had a chat with a consultant paediatrician as well today and he went through everything that would happen with Sunshine from when he was born, very hard hearing a lot of it, i don't like hearing it and don't like talking about it, on the plus side he said we would get to see Sunshine after they got the tubes in straight after he's born and before they rush him to PICU, only if things aren't very serious, though it won't be for long at all it's better than nothing.

Next was a trip to the wing i'll be staying in while there, good thing is there is no babies in it, it's for women who's babies haven't been born yet and for women who's babies aren't with them for whatever reason, so i'm quite glad about that, i already have a baby phobia since Nathan, the PICU will be the closest i've been to babies since Nathan so i'm quite nervous about that.

Next was a trip up to PICU omg that was sooo hard, seeing these tiny babies and all the machines and noises, standing at the door of each room was enough for me i just couldn't go in.

Have been booked in for 2pm on the 10th November, with induction set for the 11th, Ricky's not allowed to stay that 1st night as nothing will be happening, but really don't want to be left on my own :(

and it looks like from the way they were talkin today that we will have to travel back and forward to see Sunshine in the hospital. not sure how i'll cope with that, just want to be with my little boy :(

3 comments:

Tracy Meats said...: Praying for "Sunshine" and you!! Stay strong and tell "Sunshine" to keep fighting!!

Much love to you,
Tracy Meats, Ian's mom from Cherubs; 23 October 2009 at 00:25
Unknown said...: Hi Hayley,
I have been thinking about you so much since reading your blog. I left a comment last week your pregnancy is word for word so like mine.I have many things I would love to reassure you about just little things but it may help. My name is sharon and I come from fife now mum to Campbell who is 14wks old. All cdh babies are different but please contact me if you need to talk I would love to help.My email is sstocks209@googlemail.com. I hope to hear from you take care x x; 23 October 2009 at 17:47
Liz and Shane said...: praying for you and your sunshine.
stay strong!; 23 October 2009 at 19:21