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01-22-2007, 09:48 PM
[left:cf98f5ea79]http://www.cherubs-cdh.org/Album/new/reid-rebecca56.jpg[/left:cf98f5ea79]Our beautiful Cherub Rebecca Jade was diagnosed with a left sided CDH at our 18 week ultrasound. What we thought was going to be a routine scan where we found out the sex of our baby turned out to be the beginning of the hardest journey that Carl and I have ever had to travel. We were told that something wasn't quite right by the sonographer and that she needed the radiologist to have a look at Rebecca's scan. The radiologist told us that our baby had a diaphragmatic hernia, that she had a 10% chance of survival, and that basically most people terminated their pregnancy. She also performed an amniocentesis to rule out a genetic cause of the hernia. I spoke to my obstetrician on the phone that day but was unable to see him for four days as it was coming up to the weekend. They were the longest four days in our lives, not knowing what to do, and thinking that our baby was not going to survive.
On the Monday, our obstetrician arranged for us to meet Dr Jenni Sokol, a paediatrician who had a lot of experience with CDH babies. She explained to us what it was and also told us Rebecca had a 60% chance of survival. We knew that it wasn't our choice whether Rebecca lived or not, and that whatever was going to happen, would happen, but we were not going to be the ones to decide Rebecca's fate. We had to give her every chance at survival. The next 20 weeks were what seemed like the longest 20 weeks we had ever experienced. I decided that I would deliver Rebecca via a caesarian section, as I needed some control over what was happening.
Rebecca was born on the 11th of November 2002, at King Edward Memorial Hospital for Women in Perth, Western Australia. She was immediately intubated and taken to the NICU. Carl followed her to the unit while I went to recovery and then my room. We had decided to have Rebecca baptized on the day she was born. I was extremely sick with nausea and vomiting and only managed to see Rebecca for about 10 minutes while she was baptized. It wasn't until day three that I could actually get out of bed without vomiting and spend any time with Rebecca. Carl had kept a bedside vigil while I couldn't be there and was given a bed to sleep in my room.
Rebecca wasn't coping on conventional ventilation and was changed to the high frequency oscillator on the day she was born. She remained on HFO for four days and then she was switched back to conventional ventilation. By the Sunday of the first week, her doctors decided that she was stable enough to be transferred to Princess Margaret Hospital where her surgery would take place on the Monday.
On the Monday morning, Dr Sokol decided that Bec wasn't fit enough for surgery. We waited until day 12 when her surgery finally took place. It was all over in less than two hours. We had been warned that following surgery, Bec would deteriorate. The staff had the HFO, and nitric oxide set up alongside her. She was proving to be a typical female and did everything in her own good time. It wasn't until two days later, at 4.30am that Bec crashed. They called us out from our room and told us that Bec would have to be started on nitric. We asked if she would also need HFO but they said that she might not. A few hours later, her pressures were too high and she was switched over to HFO. Bec remained on nitric for about four days, with the nurses slowly weaning it. Bec remained on the HFO until the 13th December. It had been a very long month, waiting for Rebecca to improve, only to see her go backwards .On the 30th of November she became so unwell that she ended up back on nitric oxide .It took six long days to wean her from the nitric. It really did seem like one step forward and two steps back.
The doctors decided on the 13th of December to switch Bec back to conventional ventilation. I wasn't with her the first time she was changed from one ventilator to the next, but I stayed with her this time. Carl was back at work by this stage, so I was alone. Rebecca handled the change well, and within a few days, she was doing most of the work herself, with the ventilator offering only minimal assistance.
The 13th of December was also the first time I was allowed to hold my baby. Carl was at work and although I would have loved to have shared my first hold with him, I couldn't wait any longer. Rebecca was four weeks and four days old. She was still attached to many pumps and the ventilator but I got to hold her. Carl got his first hold on the Monday, when Bec was exactly five weeks old.
On the 19th of December the doctors finally decided Bec was ready to be extubated. The wonderful nurses took her tube out, and I heard Rebecca cry for the first time. She was placed on CPAP, which she hated, and also had to have an oral gastric tube instead of a nasogastric tube put in, which she wasn't very impressed about. Bec only needed CPAP for four days and then only oxygen. Again she only needed this until the 28th of December. After that she held her own. She had all of her lines removed and was only left with a nasogastric tube for feeding.
I had been expressing my breast milk since Bec was born. She was being fed my EBM via her NGT. At one stage the doctors queried whether or not Bec had developed a chylothorac, so they fed her monogen formula for a week or so, and then slowly started to reintroduce my breast milk. Once the doctors were convinced that Bec's breathing wasn't being affected with the re introduction of my EBM, they decided I could try and breastfeed her. The first time she latched on she gave herself a fright (and a mouthful of milk!), but after a couple of very trying days Rebecca decided she knew what she wanted, and started to breastfeed. For me this was just as exciting as when she was taken off the ventilator, as it was another important step in taking her home.
For the next week, we were allowed to bring Rebecca home on day leave. It was my birthday that week, and I was able to be at home with my baby and family instead of in the hospital. I couldn't have asked for a better present. By the end of the first week, we were allowed to have Rebecca stay with us overnight at home. Sleeping in our own bed was wonderful, as we had been living at PMH for past nine weeks. Finally on the 20th of January, exactly 70 days (10 long weeks) Bec was discharged from hospital. I got to cut off her nametags and then I couldn't get out of the hospital fast enough.
Rebecca is now 2 and a half years old. Although she did breastfeed, she never progressed to solids. She also failed to gain weight and at 16 weeks of age, we started overnight feeds to try and help her weight gain along. Two years later and the overnight feeds continue. Rebecca still has an oral aversion, but is slowly making progress with some solids. She had a button inserted when she was six months old and that for us has been so much better than the NGT.
Carl and myself would like to thank both our families and friends who supported us through the most difficult time of our lives. For all their thoughts and prayers, we are very grateful.
To all of the Cherub members who offered support, thank you. Being able to remain in contact with people who have traveled a similar journey made it just that little bit easier. We truly would have been lost without you all.
Written by Rebecca’s parents, Maryanne and Carl Reid (Australia)
2006
On the Monday, our obstetrician arranged for us to meet Dr Jenni Sokol, a paediatrician who had a lot of experience with CDH babies. She explained to us what it was and also told us Rebecca had a 60% chance of survival. We knew that it wasn't our choice whether Rebecca lived or not, and that whatever was going to happen, would happen, but we were not going to be the ones to decide Rebecca's fate. We had to give her every chance at survival. The next 20 weeks were what seemed like the longest 20 weeks we had ever experienced. I decided that I would deliver Rebecca via a caesarian section, as I needed some control over what was happening.
Rebecca was born on the 11th of November 2002, at King Edward Memorial Hospital for Women in Perth, Western Australia. She was immediately intubated and taken to the NICU. Carl followed her to the unit while I went to recovery and then my room. We had decided to have Rebecca baptized on the day she was born. I was extremely sick with nausea and vomiting and only managed to see Rebecca for about 10 minutes while she was baptized. It wasn't until day three that I could actually get out of bed without vomiting and spend any time with Rebecca. Carl had kept a bedside vigil while I couldn't be there and was given a bed to sleep in my room.
Rebecca wasn't coping on conventional ventilation and was changed to the high frequency oscillator on the day she was born. She remained on HFO for four days and then she was switched back to conventional ventilation. By the Sunday of the first week, her doctors decided that she was stable enough to be transferred to Princess Margaret Hospital where her surgery would take place on the Monday.
On the Monday morning, Dr Sokol decided that Bec wasn't fit enough for surgery. We waited until day 12 when her surgery finally took place. It was all over in less than two hours. We had been warned that following surgery, Bec would deteriorate. The staff had the HFO, and nitric oxide set up alongside her. She was proving to be a typical female and did everything in her own good time. It wasn't until two days later, at 4.30am that Bec crashed. They called us out from our room and told us that Bec would have to be started on nitric. We asked if she would also need HFO but they said that she might not. A few hours later, her pressures were too high and she was switched over to HFO. Bec remained on nitric for about four days, with the nurses slowly weaning it. Bec remained on the HFO until the 13th December. It had been a very long month, waiting for Rebecca to improve, only to see her go backwards .On the 30th of November she became so unwell that she ended up back on nitric oxide .It took six long days to wean her from the nitric. It really did seem like one step forward and two steps back.
The doctors decided on the 13th of December to switch Bec back to conventional ventilation. I wasn't with her the first time she was changed from one ventilator to the next, but I stayed with her this time. Carl was back at work by this stage, so I was alone. Rebecca handled the change well, and within a few days, she was doing most of the work herself, with the ventilator offering only minimal assistance.
The 13th of December was also the first time I was allowed to hold my baby. Carl was at work and although I would have loved to have shared my first hold with him, I couldn't wait any longer. Rebecca was four weeks and four days old. She was still attached to many pumps and the ventilator but I got to hold her. Carl got his first hold on the Monday, when Bec was exactly five weeks old.
On the 19th of December the doctors finally decided Bec was ready to be extubated. The wonderful nurses took her tube out, and I heard Rebecca cry for the first time. She was placed on CPAP, which she hated, and also had to have an oral gastric tube instead of a nasogastric tube put in, which she wasn't very impressed about. Bec only needed CPAP for four days and then only oxygen. Again she only needed this until the 28th of December. After that she held her own. She had all of her lines removed and was only left with a nasogastric tube for feeding.
I had been expressing my breast milk since Bec was born. She was being fed my EBM via her NGT. At one stage the doctors queried whether or not Bec had developed a chylothorac, so they fed her monogen formula for a week or so, and then slowly started to reintroduce my breast milk. Once the doctors were convinced that Bec's breathing wasn't being affected with the re introduction of my EBM, they decided I could try and breastfeed her. The first time she latched on she gave herself a fright (and a mouthful of milk!), but after a couple of very trying days Rebecca decided she knew what she wanted, and started to breastfeed. For me this was just as exciting as when she was taken off the ventilator, as it was another important step in taking her home.
For the next week, we were allowed to bring Rebecca home on day leave. It was my birthday that week, and I was able to be at home with my baby and family instead of in the hospital. I couldn't have asked for a better present. By the end of the first week, we were allowed to have Rebecca stay with us overnight at home. Sleeping in our own bed was wonderful, as we had been living at PMH for past nine weeks. Finally on the 20th of January, exactly 70 days (10 long weeks) Bec was discharged from hospital. I got to cut off her nametags and then I couldn't get out of the hospital fast enough.
Rebecca is now 2 and a half years old. Although she did breastfeed, she never progressed to solids. She also failed to gain weight and at 16 weeks of age, we started overnight feeds to try and help her weight gain along. Two years later and the overnight feeds continue. Rebecca still has an oral aversion, but is slowly making progress with some solids. She had a button inserted when she was six months old and that for us has been so much better than the NGT.
Carl and myself would like to thank both our families and friends who supported us through the most difficult time of our lives. For all their thoughts and prayers, we are very grateful.
To all of the Cherub members who offered support, thank you. Being able to remain in contact with people who have traveled a similar journey made it just that little bit easier. We truly would have been lost without you all.
Written by Rebecca’s parents, Maryanne and Carl Reid (Australia)
2006