Our Little Sunshine's CDH Journey: Changes

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, 18 November 2009

Changes

Well after my update last night we went back up to see Lewis, his blood gases had been comin back not so good and he was on a blood transfusion, while we were there it was decided they were goin to change the type of ventilator he's on so he's now on the oscillator. Which makes him vibrate, not very nice to see but if he likes thats 1 better then itl do him good, its hard seein so many changes happenin in 1 night when up till repair day we've been used to everythin bein stable n him just stayin the way he was, they have said hes doin everythin expected of him as a CDH baby so all that is normal for him, but still hard for us as his parents when things change, we don't want changes we want constant stability though we know its impossible, he's just the most beautiful wee thing ever

4 comments:

Tracy Meats said...: Lewis is fighting! Hope the change in vents will help him. These 48-72 hours after surgery is a roller coaster, but focus on the positive and BELIEVE in miracles. Praying for Lewis and your family. Tell Lewis the world is praying for him and cheering him on!!

Much love,
Tracy; 18 November 2009 at 16:05
Liz and Shane said...: Keep Fighting Lewis! I am praying for Lewis to get stronger everyday.; 18 November 2009 at 17:59
Jaime's World said...: Jaime was on the oscillating vent twice, we truly believe it saved his life. Don't let the changes get you down, unfortunately it's all part of the CDH roller coaster!
Sending many prayers your way.
Hugs,
Sheryl; 18 November 2009 at 20:45
Anonymous said...: Lewis remains in my thoughts and prayers!
Fight hard little man.

hugs from down under
Shaz
CHERUBS Australia; 19 November 2009 at 00:58