Our Little Sunshine's CDH Journey: Mummys clever boy

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.

Monday, 30 November 2009

Mummys clever boy

well this evening extubation time finally came round, think the pictures will say it all,

Lewis in his last picture on the ventilator :)

A very quick snapshot with NOTHING on his face, the nurse managed to take the pic quickly inbetween them takin ventilator off and putting the CPAP on

and Lewis on his CPAP, doing ALL his own breathing :)

Lewis with his very first dummy he got earlier, he loved it, has such a great suck on him, hopefully can only be a good thing for when he starts gettin his milk orally, he sounded and looked like maggie simpson, was so funny

6 comments:

Tracy Meats said...: Way to go Lewis!!! He is one good looking little boy! Praying for many good and strong days in his future. Keep going strong Lewis!!

Much love,
Tracy, Ian's mom from CHERUBS; 30 November 2009 at 23:37
dai said...: YAY!!! So so happy to see the progress. Whata a cutie pie. Thanks so much for all the lovely pix. Will continue to pray for you Lewis...

Love,
Dai; 1 December 2009 at 01:37
Dawn-Archies-mummy said...: fantastic hun, well done, so pleased to hear lewis is progressing so well xx; 1 December 2009 at 09:27
Jennifer Tenney said...: Yay!!!! So glad for you and Lewis! What a handsome boy!!! He is making such great progress!!!!!!; 1 December 2009 at 12:24
Christmas with Kasey said...: yeah Lewis! What a special picture of him with nothing on his beautiful face!; 1 December 2009 at 20:25
Gillian Brown said...: Hayley i'm sooooo pleased!!Lewis is a 'Star'...you must be so chuffed!!Keep up the good work Lewis!!!!!!
Gil & Family xx; 1 December 2009 at 21:18

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