Our Little Sunshine's CDH Journey: Not getting off the ventilator today

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.

Wednesday 25 November 2009

Not getting off the ventilator today

They just tried takin lewis off the ventilator but he wasn't coping too well and was struggling a bit and his sats were going a bit mad so they've just kicked us out while they put him back on it, was so hopin he'd get it off today so i can get a cuddle but i guess he's just not ready, not sure when they'll try again just see how he goes x

3 comments:

Gillian Brown said...: He'll be well worth the wait!!I remember them trying Kaden a good few times and him not being ready - he'll do it in his own time.
Take Care Gil xx; 25 November 2009 at 13:25
Jaime's World said...: Jaime was on the vent for 41 days his first NICU run and 8 days, for his second. It will come, all in due time! Keep getting stronger little man so that Mommy can hold you!
Many prayers coming your way!
Sheryl; 26 November 2009 at 04:58
Candice and Rob Beal said...: he's still so young! he's done so well! He'll be great! What an amazing boy....lots of love and prayers.....; 27 November 2009 at 18:27

Journey So Far (since diagnosis)

17+3 weeks: Congenital Diaphragmatic Hernia found

18 weeks: CDH confirmed, stomach and part bowels up

24+1: MRI, still stomach and bowels up, liver down

26+1: still stomach and bowels up, LHR=1.3 - 1.5, no visible left lung

28+2: 4d scan, EFW=3lb

30+1: still stomach and bowels up, liver down, LHR=(greater than) 2

34+2: 1st steroids

34+3: 2nd steroids and MRI (get results in 2 weeks) high fluid levels, EFW=5lb 3oz

36+2: still stomach and bowels up, liver down, LHR= 2.2, EFW 6lb 12oz, higher than normal range fluid levels

37+2: final visit to fetal medicine, Fluid levels looking better, EFW 7lb 1oz