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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 - 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 2
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 dakotagurrl » Posted Oct. 20, 2017 1:51pm Thank u so much for all the kind words, thoughts and prayers. It's been a rough few days but I'm trying to put the negative behind me and just prepare for the days ahead. I've started doing research on accommodations, car rentals, stores in the area etc. The Ronald McDonald house is on-site, and our case definitely applies to their requirements to stay, so that'll definitely make things easier. I'm gonna pack an "away" bag soon, in case things don't happen when the Drs plan. I don't see myself going into labour, it just isn't something my body does without heavy provocation...but, I also haven't had a sick baby inside me before, so who knows what my body will do this time. I will be prepared tho! |
 | Comment from RPope84 » Posted Oct. 19, 2017 12:58pm Oh Sandy, I'm sorry I just saw this! I can't even begin to imagine what you're going through right now. It sounds like you have a really great team taking care of you and your little girl. I know they sound very pessimistic, but they can't give people false hope and put themselves at risk, so they're going to give you the worst case scenario and err on the negative side. I know you can be strong and optimistic after you've processed all of this. You have an army here praying for you and that baby. Like I've said before, she's a fighter already, and so are you. Big big hugs. |
 | Comment from cmere84 » Posted Oct. 19, 2017 11:49am Your baby girl is a little fighter! I definitely wasnt expecting this news, and I'm so sorry you have to go through this. I am keeping you and your baby girl in my thoughts and prayers. |
| Comment from Basia30 » Posted Oct. 19, 2017 7:41am Stay strong mama !!! |
 | Comment from Starmama14 » Posted Oct. 18, 2017 12:55pm Oh man. This is definitely not the JE I was expecting to see from you. I am so sorry! This little peanut is so lucky to have a mama who will fight to do everything possible for her. We are all here for you if you need to talk. Wish there was more I could say or do for you :( Hang in there mama! |
 | Comment from brittthomp4 » Posted Oct. 18, 2017 10:57am I’ve been following your story. I know this condition is very rare. But there can be good outcomes so keep your chin up. A good friend of mine had a baby last year with the same condition but was undiagnosed until birth. They did an immediate surgery to correct the hernia and 2 months later they got to take her home. I know they say 50% will survive but I’m sure your little one has better odds diagnosing early and with a plan I hope all will be okay for you and your family. I hope this post isn’t insensitive, just thought a successful story would lift your spirits. I can’t imagaine your distress. Take care hon. |
| Comment from ericalee » Posted Oct. 18, 2017 9:12am Fuck. Along with all the other ladies I have been anxiously refreshing this site expecting to read an update that this was all nothing. It's ok to cry. A lot. You are a wonderful mom and will do anything in your power for your children, so this little girl is so fortunate for that. I know you will do whatever it takes for her. You just keep being strong for both of you and having faith that she is one of the fighters and will beat the odds. It sounds like you have a great team of specialists that will focus on doing what they do best too. So let them focus on all the medical mumbo jumbo and you focus on showing your little girl how much she is loved and telling her how strong she is. I know there is really nothing I can say to make you feel ok with this, but know I am here for you. And this non-religious girl is going to pray her heart out for you and your baby! |
| Comment from nreiselpn » Posted Oct. 18, 2017 8:24am Oh..... my stomach turned as I read this.... I'm sorry. You will remain in our thoughts and prayers...... |
