Community
dakotagurrl's Pregnancy
My Due Date: January 3, 2022I am postpartum » My due date was more than 2 weeks ago
Age: 45 years old
Location: Canada
View All My Journal Entries
Follow-up appt and results.
By dakotagurrl » Posted Oct. 18, 2017 4:47am - 958 views - 18 comments
I arrived to register at 7:50am for my follow-up scan, yesterday morning, and was taken in a few mins later. They did another anomaly scan and everything measures on par with her due date. FHR was 143 and baby was very active. The radiologist viewed the pics as they were taken, then came in to discuss the findings. When he came in, he brought another Dr and the sonographer with him, to do a live scan. They looked around, mumbling back 'n forth, then he gave me the results. A Congenital Diaphragmatic Hernia (CDH) has been confirmed. It is a left sided hernia with bowel up in the thorax, pushing the heart to the right. The bowel is dilated, above and below the diaphragm, indicating an obstruction. Due to the heart being pushed and tilted to the right, they weren't able to get good pics of it to investigate. I was then sent over to the Pediatric Cardiology Clinic for an echocardiogram. The cardiologist reviewed the pics and brought me into his office to discuss the findings. She has a Ventricular Septal Defect. On it's own, its not a huge threat, and is very treatable...but in the grand scheme of things, it's one more thing working against her.
The high risk OB met with some Drs over lunch, and had me come back to speak with him...or so I thought. He brought me into a room with a large rectangular table and 6 specialists sitting around it. They each introduced themselves and briefly explained their part in all of this. I sat down and within a minute, felt faint. The gravity of the situation hit me, hard! 6 specialists in a room to discuss every detail of my little girl's care, from now to well after birth. They made it very clear, numerous times, that this wouldn't be easy! She has a long, tough road ahead of her...if she can even make it to that road. Surgery is a guaranty, but no one can give me a prognosis becuz every bit of it depends on the degree of Pulmonary Hypoplasia. I can tell u, not one of them looked like they had any hope. Normally, a defect or illness being caught early on, is a good thing...so u would think. With something like this, being seen so early and so prominently on tiny organs, indicates the severity of it all. I heard the words "termination" and "pass away" more times in 30 mins, than I have in my entire life. I have never felt more dejected. I walked in with nothing but hope and positivity, and left feeling alone and helpless. I don't have an ounce of positivity left. I keep trying to find the good, hoping that she'll be one of the success stories I read about, but right now I can't...I just can't!
After, I went for bw to further test for chromosomal abnormalities, as trisomies 13 & 18 are typically found with these defects. They pushed for an amnio, but I declined. Imo, the risk isn't worth knowing. Termination isn't an option for me, so knowing if she has CA will not change how she is cared for afterwards. That can be tested when she's out.
So as of now, the plan is that I will continue to see my OB for the next few weeks, as well as the high risk OB for regular growth scans. We also see the cardiologist every 5-6wks for echoes, to watch that hole. Sometime closer to the 34 week mark, I meet with the team of surgeons to discuss the plan, based on the u/s findings at that time, as to what route they wanna take. I will be delivering at that hospital, 2hrs from home, and baby won't be transferred for weeks or months, depending on how things go. I will, of course, be staying with her (or in a nearby hotel) for the duration of her stay. Hubs will stay home with the littles and bring them up to visit/stay with us every few days.
Idk, Idk what else to say. Everything's a little overwhelming right now, I need time to process it all and (hopefully) stop crying long enough to gather up some positivity to fight for this little girl.
Hope ur all well. Take care, ladies!
My Journal - Page 3
Follow-up appt and results.
By dakotagurrl » Posted Oct. 18, 2017 4:47am - 958 views - 18 comments
I arrived to register at 7:50am for my follow-up scan, yesterday morning, and was taken in a few mins later. They did another anomaly scan and everything measures on par with her due date. FHR was 143 and baby was very active. The radiologist viewed the pics as they were taken, then came in to discuss the findings. When he came in, he brought another Dr and the sonographer with him, to do a live scan. They looked around, mumbling back 'n forth, then he gave me the results. A Congenital Diaphragmatic Hernia (CDH) has been confirmed. It is a left sided hernia with bowel up in the thorax, pushing the heart to the right. The bowel is dilated, above and below the diaphragm, indicating an obstruction. Due to the heart being pushed and tilted to the right, they weren't able to get good pics of it to investigate. I was then sent over to the Pediatric Cardiology Clinic for an echocardiogram. The cardiologist reviewed the pics and brought me into his office to discuss the findings. She has a Ventricular Septal Defect. On it's own, its not a huge threat, and is very treatable...but in the grand scheme of things, it's one more thing working against her.
The high risk OB met with some Drs over lunch, and had me come back to speak with him...or so I thought. He brought me into a room with a large rectangular table and 6 specialists sitting around it. They each introduced themselves and briefly explained their part in all of this. I sat down and within a minute, felt faint. The gravity of the situation hit me, hard! 6 specialists in a room to discuss every detail of my little girl's care, from now to well after birth. They made it very clear, numerous times, that this wouldn't be easy! She has a long, tough road ahead of her...if she can even make it to that road. Surgery is a guaranty, but no one can give me a prognosis becuz every bit of it depends on the degree of Pulmonary Hypoplasia. I can tell u, not one of them looked like they had any hope. Normally, a defect or illness being caught early on, is a good thing...so u would think. With something like this, being seen so early and so prominently on tiny organs, indicates the severity of it all. I heard the words "termination" and "pass away" more times in 30 mins, than I have in my entire life. I have never felt more dejected. I walked in with nothing but hope and positivity, and left feeling alone and helpless. I don't have an ounce of positivity left. I keep trying to find the good, hoping that she'll be one of the success stories I read about, but right now I can't...I just can't!
After, I went for bw to further test for chromosomal abnormalities, as trisomies 13 & 18 are typically found with these defects. They pushed for an amnio, but I declined. Imo, the risk isn't worth knowing. Termination isn't an option for me, so knowing if she has CA will not change how she is cared for afterwards. That can be tested when she's out.
So as of now, the plan is that I will continue to see my OB for the next few weeks, as well as the high risk OB for regular growth scans. We also see the cardiologist every 5-6wks for echoes, to watch that hole. Sometime closer to the 34 week mark, I meet with the team of surgeons to discuss the plan, based on the u/s findings at that time, as to what route they wanna take. I will be delivering at that hospital, 2hrs from home, and baby won't be transferred for weeks or months, depending on how things go. I will, of course, be staying with her (or in a nearby hotel) for the duration of her stay. Hubs will stay home with the littles and bring them up to visit/stay with us every few days.
Idk, Idk what else to say. Everything's a little overwhelming right now, I need time to process it all and (hopefully) stop crying long enough to gather up some positivity to fight for this little girl.
Hope ur all well. Take care, ladies!
Comments for this Journal Entry
 | Comment from gemmalou79 » Posted Oct. 18, 2017 6:01am Oh Sandy, I was not expecting to read this:( ... you know I am here for you for whatever you need!!! I know you are a strong person but this will be hard to come to terms with right now but I know you will eventually in your own time. This little girl has picked you for her Mom for a reason..... I really don't know what else to say other then you know where I am if you need me. Take care of yourself x |
 | Comment from Angela18 » Posted Oct. 18, 2017 5:37am I came on here to check on you and I really was expecting all of this to be nothing. I really don’t know what to say...I’ve been praying for you and your family. You are a strong chick and that’s one thing your little girl needs. I don’t want to give false hope as I know nothing of the diagnosis, but as you know, she is here for a reason no matter how long or how short that time may be. Take time to grieve which I know is tough with little ones running around. Do your research and prepare yourself for all possibilities. And most important after all that, is enjoy your pregnancy and enjoy your little girl. Wish I had something to say to take the hurting away. My family will keep you guys in our prayers xoxo. |
