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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
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Follow-up appt and results.
By dakotagurrl » Posted Oct. 18, 2017 4:47am - 957 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
Follow-up appt and results.
By dakotagurrl » Posted Oct. 18, 2017 4:47am - 957 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 diamondbaby » Posted Nov. 9, 2017 4:40am Thinking of you, Sending positive thoughts and prays your way. Xxx |
 | Comment from hopingforbfp » Posted Nov. 5, 2017 1:40am My thoughts and prayers are with you and your baby girl. *hugs* |
| Comment from Angela18 » Posted Nov. 3, 2017 6:54am I’m exactly the same, so I can imagine what your going through (went through that with my first). And the thing is the doctors are going to give worse case scenarios also to cover their asses. I researched this a little, and unless there is more going on, your little girl still has a good survival rate. They pulled the termination card on me for my first too. Point is they don’t know everything right now and there is always hope. Been praying everyday for you guys, hang in there girl |
| Comment from dakotagurrl » Posted Nov. 1, 2017 1:19pm Thank u, ladies! I def wasn't expecting it to be this bad, either. I know ultrasounds can be wrong, depending on the Dr reading them (my "heart-shaped" uterus is a perfect example), so I really didn't expect them to find much. I think that's why it hit me as hard as it did. Even now, I'm having a hard time grasping that something is wrong, when I feel great, and she's movin' n groovin' like it's going out of style. Besides the scans, there's zero indication that things aren't well. It's a scary road. I have a need-to-know personality, so being forced to "wait and see", is taking a toll on my sanity. We will get through it tho...we have no choice but to!! |
| Comment from phatgurl » Posted Nov. 1, 2017 11:55am You and your sweet girl are on my mind. I, like others, was not expecting this entry. I thought I would come back to check, and everything would have been dismissed as nothing to fret over. I believe in miracles, and I am holding out for one for you! |
 | Comment from Randall0123 » Posted Oct. 31, 2017 9:45am Sandy, I missed this. I'm so sorry to hear this. I really don't know what to say. But you and your family are amazing and strong people. Try to stay positive and strong. I'm thinking of you guys! |
 | Comment from MalPal85 » Posted Oct. 26, 2017 2:51pm I am so sorry to hear this. You're one of the strongest/toughest chicks I've met on these websites so I know you will get through. I will be keeping you all in my thoughts! |
| Comment from dakotagurrl » Posted Oct. 20, 2017 2:01pm Ran outta room...We've also decided we aren't telling the in-laws about the situation, when we do finally tell them I'm pregnant. I don't need or want a bunch of questions from them. When the time comes, they will also be restricted from visiting at the hospital. She's not bringing her smoky body in to cough all over those sick children. Britt, ur comment wasn't insensitive at all, thank u for a positive story. It def helps! |
