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April 2018 Moms
sparklingdiamond
member
CDH- Update
sparklingdiamond
member
Thank you so much to everyone who has been thinking about us this week. It was definitely an emotional week for sure and this will probably get a little long.
First, the good part is that I was able to enjoy the nice weather with my family. My brother did fly in from Jamaica and we all got to spend Christmas day together and a few days after. We just got home late last night. I am both happy and sad to be home. We went to the Hard Rock for dinner on Christmas and I totally forgot that you can still smoke in casinos, so I was the pregnant lady bringing in my 3 year old to the casino lol. I felt like mom of the year! But it was non-smoking in the actual restaurant. You just had to walk through the smoky areas to get there.
My first appointment was on Tuesday morning and that was the fetal MRI. There was a mix-up with this appt and they didn't have me on the schedule! I was like oh crap what am I supposed to do?! I texted Dr. Kays' nurse (which I felt bad about because she was off that week) and she called up there. They still were confused and wouldn't get it scheduled. She was insisting it be done that day and they finally tried making the appt but then there was an insurance with my insurance. They needed to get a "stat" authorization so that insurance would pay for it to be done the same day the test was done since they usually get authorizations in advance. We were up at the hospital for over 2.5 hours and then they finally got us in! All the people in the radiology dept were great and I appreciated all their help. Fortunately, baby girl cooperated and the scan only took about 30-45 min (sometimes it can take up to 2 hours). I have never had an MRI and was super not a fan. Especially since I had to lay on my back the whole time and my heartburn was bad and I hadn't eaten! They didn't tell me anything about the results that day because the radiologist had to review them.
The next appointment that day was the MFM appt. We ended up being there for 3 hours! I thought this was going to be the quick appt. But we kind of did an OB type appt first and then the MFM u/s. Apparently, this is the office that would be delivering the baby. They are the only MFM office in 5 counties that actually also delivers the babies. That appointment went fine. They gave us a lung volume estimation of about 40-50% based on u/s. This is only based off of measuring the bigger healthier lung and isn't always accurate. Nothing really new showed up on this u/s, which is good.
The next appointment was the next morning and that was the ECHO. I never knew there were so many things that could be measured on the heart! It was a long appt, but at least I got to lay on a comfier hospital bed instead of the typical chairs you have to sit in for an u/s. They basically measure every artery, vein, etc and listen to each one. Then we met with the cardiologist to go over the results. She said that one of the valves on the left side is smaller than normal and could be because of compression from the other organs, but is something that we need to watch and have remeasured at a later date. There is also a small hole in part of the heart, but even healthy babies can have these and they normally just close on their own. Both of these are relatively minor issues.
The last appointment was with Dr. Kays. He was great and super knowledgeable. He gave us a lot of information about CDH in general and asked us questions to get to know us personally. After he gave us a lot of the information, he gave us specific information about Jasmine. The MRI showed that she has stomach, spleen, part of the intestine, and about 10-15% of the liver up in the chest. So actually, she falls on the less severe end of the liver up spectrum (liver up is typically the most severe). It also showed she has about 22% lung volume. The MRI measures lung volume based off of both lungs, while the u/s measures based off of the healthy lung. I asked if either was more accurate and he said not really because they measure differently, but that MRI results are more reproducible. So basically, her lung volume is likely somewhere between 22-41%. Either way, he said both are survivable. He gave her about a 50% chance of needing ECMO (less chance if her lung volume is closer to 41% and more chance if it's closer to 22%, so 50% was the rate for both combined). And a 95% chance of survival. I felt really encouraged by this. He said NICU time could range from about 4-10 weeks depending on if she needs ECMO or not.
His staff gave us a quick tour of the hospital and then he wanted to meet with us again for some reason. He said that the radiologist had just given him a call and had some concerns about the lungs. He said that the lung tissue didn't look "normal" and that there was fluid around the right lung. Obviously, I was crushed to hear that now maybe something else was wrong. He said that the radiologist's concerns along with the fact that we have a 2 vessel umbilical cord instead of a 3 vessel warranted further genetic testing just to make sure there is nothing else going on. So he is really encouraging me to get an amnio. I am just devastated at this point. I had all this hope and felt good and now something else?? I told him that and he said that's what they call the CDH roller coaster. Things go well and then there always seems to be some type of bump in the road. His nurse told me they have had several patients with this fluid around the lung and that it can just reabsorb, but that it gives them reason to look out for fluid showing up in other areas because they could indicate a condition called hydrops, which is very bad. So I had to have time to process all of this. But now I am still trying to remain hopeful. We had already ruled out trisomy 13, 18, 21, and any sex chromosome related issues, so we know it isn't those. I am just praying with everything I have that this amnio comes back clear. I am just so afraid I won't get to take my daughter home.
First, the good part is that I was able to enjoy the nice weather with my family. My brother did fly in from Jamaica and we all got to spend Christmas day together and a few days after. We just got home late last night. I am both happy and sad to be home. We went to the Hard Rock for dinner on Christmas and I totally forgot that you can still smoke in casinos, so I was the pregnant lady bringing in my 3 year old to the casino lol. I felt like mom of the year! But it was non-smoking in the actual restaurant. You just had to walk through the smoky areas to get there.
My first appointment was on Tuesday morning and that was the fetal MRI. There was a mix-up with this appt and they didn't have me on the schedule! I was like oh crap what am I supposed to do?! I texted Dr. Kays' nurse (which I felt bad about because she was off that week) and she called up there. They still were confused and wouldn't get it scheduled. She was insisting it be done that day and they finally tried making the appt but then there was an insurance with my insurance. They needed to get a "stat" authorization so that insurance would pay for it to be done the same day the test was done since they usually get authorizations in advance. We were up at the hospital for over 2.5 hours and then they finally got us in! All the people in the radiology dept were great and I appreciated all their help. Fortunately, baby girl cooperated and the scan only took about 30-45 min (sometimes it can take up to 2 hours). I have never had an MRI and was super not a fan. Especially since I had to lay on my back the whole time and my heartburn was bad and I hadn't eaten! They didn't tell me anything about the results that day because the radiologist had to review them.
The next appointment that day was the MFM appt. We ended up being there for 3 hours! I thought this was going to be the quick appt. But we kind of did an OB type appt first and then the MFM u/s. Apparently, this is the office that would be delivering the baby. They are the only MFM office in 5 counties that actually also delivers the babies. That appointment went fine. They gave us a lung volume estimation of about 40-50% based on u/s. This is only based off of measuring the bigger healthier lung and isn't always accurate. Nothing really new showed up on this u/s, which is good.
The next appointment was the next morning and that was the ECHO. I never knew there were so many things that could be measured on the heart! It was a long appt, but at least I got to lay on a comfier hospital bed instead of the typical chairs you have to sit in for an u/s. They basically measure every artery, vein, etc and listen to each one. Then we met with the cardiologist to go over the results. She said that one of the valves on the left side is smaller than normal and could be because of compression from the other organs, but is something that we need to watch and have remeasured at a later date. There is also a small hole in part of the heart, but even healthy babies can have these and they normally just close on their own. Both of these are relatively minor issues.
The last appointment was with Dr. Kays. He was great and super knowledgeable. He gave us a lot of information about CDH in general and asked us questions to get to know us personally. After he gave us a lot of the information, he gave us specific information about Jasmine. The MRI showed that she has stomach, spleen, part of the intestine, and about 10-15% of the liver up in the chest. So actually, she falls on the less severe end of the liver up spectrum (liver up is typically the most severe). It also showed she has about 22% lung volume. The MRI measures lung volume based off of both lungs, while the u/s measures based off of the healthy lung. I asked if either was more accurate and he said not really because they measure differently, but that MRI results are more reproducible. So basically, her lung volume is likely somewhere between 22-41%. Either way, he said both are survivable. He gave her about a 50% chance of needing ECMO (less chance if her lung volume is closer to 41% and more chance if it's closer to 22%, so 50% was the rate for both combined). And a 95% chance of survival. I felt really encouraged by this. He said NICU time could range from about 4-10 weeks depending on if she needs ECMO or not.
His staff gave us a quick tour of the hospital and then he wanted to meet with us again for some reason. He said that the radiologist had just given him a call and had some concerns about the lungs. He said that the lung tissue didn't look "normal" and that there was fluid around the right lung. Obviously, I was crushed to hear that now maybe something else was wrong. He said that the radiologist's concerns along with the fact that we have a 2 vessel umbilical cord instead of a 3 vessel warranted further genetic testing just to make sure there is nothing else going on. So he is really encouraging me to get an amnio. I am just devastated at this point. I had all this hope and felt good and now something else?? I told him that and he said that's what they call the CDH roller coaster. Things go well and then there always seems to be some type of bump in the road. His nurse told me they have had several patients with this fluid around the lung and that it can just reabsorb, but that it gives them reason to look out for fluid showing up in other areas because they could indicate a condition called hydrops, which is very bad. So I had to have time to process all of this. But now I am still trying to remain hopeful. We had already ruled out trisomy 13, 18, 21, and any sex chromosome related issues, so we know it isn't those. I am just praying with everything I have that this amnio comes back clear. I am just so afraid I won't get to take my daughter home.
Re: CDH- Update
DS: EDD, December 19th, 2014. Born, December 19th, 2014!
DD: EDD, July 18th, 2016. Born, July 19th, 2016!
Baby #3: EDD, April 16th, 2016
Me (33). DH (37). DD (2.2012). MCs x4. After 4 years & 7 months, due 4.2018!
Me: 29 DH: 35
Married 5/3/14, TTC ever since
DX: Lean PCOS, Clomid resistant
Femara 7.5 + Ovidrel = BFP! Due 4/15/18
Married: 10/3/15
TTC: May 2017
BFP: 7/20/17
EDD: 3/29/18
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I also had a 2 vessel umbilical cord with my CDHer. I was told it’s common to have another defect with CDH babies but hopefully her heart and lungs continue to develop appropriately. Continued thoughts and prayers!
So many hugs!
May I ask what kind of hole it was in the heart? Was it a vsd or pfo, we had both but the pfo basically did nothing and they only patched it because she was already under.
Also hoping it doesn't turn into hydrops but I do know a few kiddos who had it in utero who are pretty healthy today.