Our Little Sunshine's CDH Journey: Surgery set

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 16 November 2009

Surgery set

For tuesday providin lewis stays stable etc till then which am sure he will, then guess after tuesday the rollercoaster really begins unless he decides to amaze us all again which i so hope he will x am still waiti to be discharged but hopefully can go today just lookin forward to bein with Ricky again missed his so much been in here a week tmoro n hes only stayed 1 night which was the night lewis was born x not much else to report at the minute main thing is our sunshine warrior is back to stable and stayin there xx

3 comments:

Reminiscing said...: Glad to hear he's stable. Praying that the surgery goes well and he recovers quickly.; 16 November 2009 at 16:51
Tracy Meats said...: Beautiful son! Praying for a successful surgery and uneventful recovery. Praying for the entire medical team caring for you warrior. Lewis, sweetie, keep fighting and amaze your mommy with your strength. Fight Lewis Fight!!

Much love to you,
Tracy; 16 November 2009 at 18:45
Wiggybunny said...: Hi Hayley. I was Wigglybunny on Sands. I haven't been in touch much since we had Izzy and then Molly, but just wanted to let you know that you, Ricky and Lewis are in my thoughts. I watched Molly be bagged two or three times during her NICU stay and it is truly terrifying. My heart goes out to you all and I am praying that tomorrow's operation is successful. ALl my love, Kate xxx; 16 November 2009 at 19:56

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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

CDH

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Monday 16 November 2009

Surgery set

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