SarahWoff
04-29-2019, 04:25 PM
Hi!
Our story starts unfortunately as many others that I read here in Cherubs so many times (I am really grateful for everyone who seat to write your story, I read all of them, always gathering inspiration and courage to continue my journey).
We discover on our 20 week scan that we were expecting a Left CDH baby. Discovering earlier means that the defect is more severe. It could be seen on the scan already that his heart was pushed aside and his stomach and part of the bowel were already pushing the lungs.
It was so hard! The doctors offered to terminate it. It was the worse week I have ever had in my life; I couldn’t stop searching the internet and reading all those terrible stories. There were a lot of happy endings also. But our case was so severe….
It was a week after that dreadful scan that we got to know our doctor, Dr Yuval who was together with us till the end. He confirmed that indeed, our case was severe and that we had 10% chance of survival!! He also said that although many counsel to terminate, he always said that if there is a chance to live, no matter how small, why not give it a chance?! It was hard, hard, hard! and now, after everything, writing this story to you, I can tell you, it was a miracle! Never stop praying, never stop believing. We have more power than we imagine to bring positive energies and help our babies.
After getting the confirmation from one of the best doctors that our baby had one of the more severe cases (our baby had a LHR of 0.7, almost no lungs could be seen and all the organs, were up), we were offer an option of doing FETO - a fetal surgery procedure that may improve outcomes in babies with moderate to severe cases of Cdh that could elevate to 50% chance of survival
We decided to do FETO and after that things started to improve a little bit. The right lung started to grow a little more and thank God I didn’t go into prematurely labor as is highly common for those who undergo FETO. But even with that, our baby still had 50% chance of survival and we were told a lot of times that doesn’t matter so much how much the lung had grown. we only will know for sure when the baby will be born
When I was 38 weeks, they decided to induce me due to IUGR (baby didn’t seem to be growing too much). As a first time labor it was taking too much time to delivery and my doctor opted to do a caesarian so that the baby will not be born too much tired and he could fight more.
When Sammy was born I remember hearing him cry 3 times. It was the most beautiful cry ever! It means in my head that we was going to be ok! I needed to hold by every small sign even if it was a baby cry! (Oh, and how I cried together!)
From then on it was a big and hard journey. I was very relived that he cried, that he survived day one! But then came NICU and I thought that if he at least reached NICU stage I will be the happiest mom! Yeaah that was in the beginning but then we I started to get used that he survived at least, I started to fall into the NICU reality – a very, very hard one I must say! It was very hard to leave our son in the hospital and come home empty handed every day (a 1.5 hour drive one way from the hospital I must say!)
Sammy had his repair surgery at day 5 (he was missing his hole left side diaphragm!), he did really well after but was still intubated and on NO, one month after came the extubation (Oh how happy I was to hold him for the first time when he was 1 month old!) and the again intubation (and our happiness and hopes droping again bec he wasn’t able to be extubated and breathe by himself or with Cpap help), he had a pneumothorax, had to be on NO2 again. Then desentubation and slowly, very slowly off the occilator and off the vent forever.. I must say I became expert on vents, Saturation, and every machine that was connected to my little boy. Every beep scaried me.
But then came the time! Sammy came home after almost 2 months in the NICU.
Sammy is now a 4-month happy baby. Thank God he is developing beautifully and hitting every developmental mark for his stage. His only issue is gaining weight but next to everything we were trough it is nothing. Our “Souvenir” from CDH is that we need to come to monthly checkups and to have an oximeter to measure his oxygen for 5 min when he is sleeping deeply two times a week.
To you dear readers, I must tell, It wasn’t easy. The pregnancy was scary not knowing what to expect, faith and prayer were what helped me go through this difficult time. To know that there is Someone above who loves you and want the best for you even when is so dark and we cannot see it. Believe me, I was there.
The NICU seemed endless. Every day there was another issue. It seemed Sammy will never breath on his own. Will never be out. We saw so many babies being discharge even CDH ones but for us, the hard CDH case, it seemed that we will never be out. But patience. We needed to give time and I realized that I cannot control everything;
There will come a day when your baby will come out of the NICU and it will be as he was never there. This is like how I fell just 2 months after this whole nightmare.
Finally it isn’t easy. I check every 5 minute if my son is breathing and I’m always worried that he will get a cold. But Sammy is the biggest gift I got and has brought so many happiness! Is natural as a parent to worry and this whole experience has taught me so much about everything and how to value every small thing.
Have Faith :)
Our story starts unfortunately as many others that I read here in Cherubs so many times (I am really grateful for everyone who seat to write your story, I read all of them, always gathering inspiration and courage to continue my journey).
We discover on our 20 week scan that we were expecting a Left CDH baby. Discovering earlier means that the defect is more severe. It could be seen on the scan already that his heart was pushed aside and his stomach and part of the bowel were already pushing the lungs.
It was so hard! The doctors offered to terminate it. It was the worse week I have ever had in my life; I couldn’t stop searching the internet and reading all those terrible stories. There were a lot of happy endings also. But our case was so severe….
It was a week after that dreadful scan that we got to know our doctor, Dr Yuval who was together with us till the end. He confirmed that indeed, our case was severe and that we had 10% chance of survival!! He also said that although many counsel to terminate, he always said that if there is a chance to live, no matter how small, why not give it a chance?! It was hard, hard, hard! and now, after everything, writing this story to you, I can tell you, it was a miracle! Never stop praying, never stop believing. We have more power than we imagine to bring positive energies and help our babies.
After getting the confirmation from one of the best doctors that our baby had one of the more severe cases (our baby had a LHR of 0.7, almost no lungs could be seen and all the organs, were up), we were offer an option of doing FETO - a fetal surgery procedure that may improve outcomes in babies with moderate to severe cases of Cdh that could elevate to 50% chance of survival
We decided to do FETO and after that things started to improve a little bit. The right lung started to grow a little more and thank God I didn’t go into prematurely labor as is highly common for those who undergo FETO. But even with that, our baby still had 50% chance of survival and we were told a lot of times that doesn’t matter so much how much the lung had grown. we only will know for sure when the baby will be born
When I was 38 weeks, they decided to induce me due to IUGR (baby didn’t seem to be growing too much). As a first time labor it was taking too much time to delivery and my doctor opted to do a caesarian so that the baby will not be born too much tired and he could fight more.
When Sammy was born I remember hearing him cry 3 times. It was the most beautiful cry ever! It means in my head that we was going to be ok! I needed to hold by every small sign even if it was a baby cry! (Oh, and how I cried together!)
From then on it was a big and hard journey. I was very relived that he cried, that he survived day one! But then came NICU and I thought that if he at least reached NICU stage I will be the happiest mom! Yeaah that was in the beginning but then we I started to get used that he survived at least, I started to fall into the NICU reality – a very, very hard one I must say! It was very hard to leave our son in the hospital and come home empty handed every day (a 1.5 hour drive one way from the hospital I must say!)
Sammy had his repair surgery at day 5 (he was missing his hole left side diaphragm!), he did really well after but was still intubated and on NO, one month after came the extubation (Oh how happy I was to hold him for the first time when he was 1 month old!) and the again intubation (and our happiness and hopes droping again bec he wasn’t able to be extubated and breathe by himself or with Cpap help), he had a pneumothorax, had to be on NO2 again. Then desentubation and slowly, very slowly off the occilator and off the vent forever.. I must say I became expert on vents, Saturation, and every machine that was connected to my little boy. Every beep scaried me.
But then came the time! Sammy came home after almost 2 months in the NICU.
Sammy is now a 4-month happy baby. Thank God he is developing beautifully and hitting every developmental mark for his stage. His only issue is gaining weight but next to everything we were trough it is nothing. Our “Souvenir” from CDH is that we need to come to monthly checkups and to have an oximeter to measure his oxygen for 5 min when he is sleeping deeply two times a week.
To you dear readers, I must tell, It wasn’t easy. The pregnancy was scary not knowing what to expect, faith and prayer were what helped me go through this difficult time. To know that there is Someone above who loves you and want the best for you even when is so dark and we cannot see it. Believe me, I was there.
The NICU seemed endless. Every day there was another issue. It seemed Sammy will never breath on his own. Will never be out. We saw so many babies being discharge even CDH ones but for us, the hard CDH case, it seemed that we will never be out. But patience. We needed to give time and I realized that I cannot control everything;
There will come a day when your baby will come out of the NICU and it will be as he was never there. This is like how I fell just 2 months after this whole nightmare.
Finally it isn’t easy. I check every 5 minute if my son is breathing and I’m always worried that he will get a cold. But Sammy is the biggest gift I got and has brought so many happiness! Is natural as a parent to worry and this whole experience has taught me so much about everything and how to value every small thing.
Have Faith :)