Shawn and I got there around 10:30 and were finally called back to a sono room around 11:20. I thought I might throw during that wait--I was more nervous than I thought I would be. The lady that did the sono was very friendly and talked the entire time letting us know what she was looking at. When it finally came to the heart, lungs, diaphragm, etc.....she did not say much.
My doctor in Amarillo made it sound like Texas Tech was going to do a really long sonogram with better technology or better equipment--but it did not seem that way to me at all. It was like a normal sonogram in the normal amount of time. It might have lasted 15 minutes. I was glad to see Miss Sunni and prayed the entire time they were finding good things.
The lady got finished and said she was going to take the pictures to the Dr. He would review them and then meet with us. After she dropped them off by him to review she took us to a "family counseling room." I am posting a picture just so you will know these rooms are not fun to be in --AT ALL-- and the first sign was the big box of Kleenex on the table.
After a short wait Dr. Edward Yeomans comes in and introduces himself. He said that the baby has a pretty bad left-side diaphragmatic hernia and her heart is already pushed completely to the right side of her chest. He explained what all this means exactly and how the intestines are already in the upper chest cavity which will really hinder the growth of the left lung and basically "take over."
He said that the sonographer saw that her heart has super thin walls----which was called something I forgot because my head was spinning----but he was going to make that as "questionable" in his paperwork at this time because he didn't see it on the pictures.
He then started with what I knew this would lead up to. The persuasion to get an amniocentesis. He said that there is a 20% chance that Sunni is not "genetically normal" and that an amnio would let us know. I told him no and he said that was my choice but he recommended it and would do it right then. Even after I said no and he said he would have to respect that decision he kept pushing it. He explained that if I did have the amnio and the baby was declared "not genetically normal" they would not offer a c-section at delivery and basically would not fight to keep the baby alive. I was of course fighting back tears and knew in my heart I would not be getting an amnio right then. I really just with we could have left at that point. CDH Moms--Is this the news/statistics you got? That there was a 20% chance? I was too upset to ask if this was just a stat for MY baby of ALL babies with CDH.
So after Shawn had to finally tell him NO we are not going to get the amnio today I felt like the tone had changed and I wasn't going to get any questions answered. He seemed bothered that I said no---even though he claimed to "respect my decision."
ALSO--CDH Moms--please correct me if I am wrong but Dr. Yeomans said that the hernia surgery is almost always done within 24-48 hours. That sent red flags up because I have read TONS of blogs of other babies that this was not the case at all. I was thinking; either he doesn't know what he is talking about or Lubbock rushes things.
As we were leaving he pushed the idea once more--that at the next appointment we can still do an amnio after I have thought about it.
As soon as we hit the elevator I was in tears. I do not have good feelings about Sunni being in Lubbock but I do not know how to go about changing that. Houston would be the optimal place since Texas Children's Hospital is there and is ranked like #2 in the nation. I also have family there. BUT then again I would be very far away from Shawn & the boys.
So all in all I feel like I got worse news than I had before (with the heart and the news that the hernia was pretty bad already---according to him). I really thought he might set in on some of the sono instead of just looking at still frame pictures. I did not care for the dr. I don't know if its because he didnt have news that I didnt want to hear or if I have a legitimate reason.
CDH Mom's--please tell me if this was what you experienced your first appointment. Also--should there have been any other news he should have given me?
After I finally got my bawl session over with Friday evening we enjoyed our time in Lubbock. I will post some pics of the boys having fun.
I will email you right away tomorrow but check out my blog on how our first days and months went with our advice. This is how it should sound. Check out rhondaandjasonholtrop.blogspot.com. The amnio will help with seeing if there is anything else they should be prepared for at birth. He worded it the wrong way and was not comforting to you. I got one just so they would be prepared. 33% of CDH babies have something else genetically wrong- that is what he needed to say. So that is why he may need to a amnio on you. It helps know what they need to care for. God is in control and will help with all of it its just good for them to prepare. Keep your head up hun. Lots have had those diagnosis and there babies rock it. God has god this. Keep positive and keep leaning into his everlasting arms. We will encourage you through this. Get your prayer team and chain out there. God will bring you through every step!!! Take care and I will keep in touch with you
ReplyDeleteI can't give you much advice on the stats and info the doctors should be giving you for CDH right now. My little man had CDH, but it wasn't found until about 34 weeks. At 20 weeks, he was diagnosed with heart defects and hydrops fetalis - but he was perfect to us in every way. So by the time we got the CDH diagnosis, it was like 'what's one more thing? he's going to be fine!' Keep your head up - I know it's hard. If you are not comfortable with the doctor though, and are toying with the idea of going to Houston, consider it. Being comfortable with your doctor is going to be key - your doctor during your pregnancy and her doctor(s) once she is born. We had an ultrasound specialist doctor that we were assigned to at 20 weeks when his abnormalities were found, and most appointments she seemed to be so grim about everything. We had weekly ultrasound appts up until he was born at 38 weeks, so many many visits with her. We finally got sick of it and switched providers and it was a GREAT decision. The doctors are going to tell you the same technical things about your baby, you might as well have someone who delivers the news to you in a positive way. I was so sick of her making us feel even worse every time we went in. I don't know that the amnio is necessary if you are that apprehensive about it. It was definitely not right of him to try to pressure you. And remember, the standard amnio is only going to tell you about the chromosomes, not the genetic pieces. And the genetic pieces get really tricky, expensive testing, and they don't give you a lot of definite answers.
ReplyDeleteI will continue to follow your journey and pray for you guys! Keep happy thoughts in your head! Wishing you all the best for you and your little girl :-)
Oh My! What a horrible experience. I don't remember exact statistics on the chromosomal disorder thing, but we were warned that Sawyer would most likely have either Trisomy 18 or Trisomy 13 with a slight chance of Trisomy 21. We did have the amnio, only because we live about 3 hours from the large medical center where we delivered and we wanted to be sure that we needed to deliver there. They told us that nothing would be done if he had T18 or T13, but they would consider treatment if it was T21. We wanted our older children (Sawyer is number 6 of 8) present if we were dealing with a fatal trisomy so they could say goodbye.
ReplyDeleteAs it turned out, his chromosomes were fine. The pediatric cardiologist was 80% sure that he had a major heart defect as well as the CDH. He didn't, his heart was fine. It was pushed way over to the right side of his chest at 19 weeks, and throughout the remainder of the pregnancy. We were told he wouldn't have a left lung, but when they did the repair surgery, an almost full sized lung unfolded and filled the space on the left side of his chest. He has done fairly well, since.
We were told by the neonatologist and the pediatric surgeon that they liked to wait until the baby's pulmonary hypertension has stabilized to the point that they had some 'wiggle room' with his meds. That way, if he needed more support after surgery, they could up his meds again. I would really check that 24-48 hour surgery window out. Remember, this is YOUR baby, not theirs. I know it is not easy to be away from your family during a NICU stay, is there a Ronald Macdonald house in Houston? I know this is overwhelming and scary. We spent the ride home from our first (and only) specialist appt crying, and planning his funeral services. That may sound morbid, but we were given so little hope that we felt that we had no other options. He is 8 years old now. Don't lose hope. Hang on!
I love the name Sawyer! Thank you for the input. I am in the process of trying to find someone with a little better bedside manner that will accept that I am not going to have an amnio. I was wondering myself about the Ronald MacDonald house. I am not even sure how to go about any of that. This is all a very new world to me. I am thankful I still have 16 weeks for figure it out (hopefully). I am sure I will break down after every dr appointment. It doesn't help that I am pregnant and emotional to begin with. These stories, like Sawyers, definitely help me get through the days. Thank you.
DeleteSorry you have to go through this. I am about 32 weeks with my LCDH boy. The 20% for genetic anamoly is true. I did have an amnio done, the same day I met with my high risk specialist and it came back normal. Is there any reason you don't want an amnio?
ReplyDeleteThey high risk OB's do not know much about what happens after birth. You need to meet with a surgeon and neonatologist and they will give you the proper info. I was first told the same as you, but when i met with the surgeon and others, they said they wait to stabilize and then do the surgery. I liked them better than my MFM. Hang in there. It all looks bleak and hopeless at first, but it will be okay. Also ask for a fetal echo to check the heart, as 30% of CDH have heart issues. My blog is at http://ourcdhherolittlea.wordpress.com/ if you want some perspective on what we have been through. All the best.
I am going to go check out your blog here in a minute. The main reasons I do not want the amnio is--1. The dr told me if it came back "abnormal" they would not offer a c-section nor to fight to keep my baby alive. 2. The next 4 months would be pure torture if it did come back abnormal 3. It wont change the way I feel or any of my prenatal care. 4. The risks that go with having an amnio in the first place. I know chances are slim--but they are for CDH as well. Overall I just feel like its not for me. Hopefully I can find a dr that will actually respect that choice.
DeleteDoing surgery in the first 24-48 hours, as far as I know, is more of an old school thought. As another poster stated - know they try waiting until the pulmonary hypertension has a chance to subside (at least a bit) before doing the surgery. And by waiting, the chances of surviving have gone up. It's still about on 50% either way however. Please trust your instincts, and get second opinions.
ReplyDeleteJess
NICU nurse, Chicago
Thank you Jessica! I am in the process of doing that.
DeleteYour scary first appointment sounds pretty similar to mine. Everything is bombarded on you and little hope is given. I did opt for the amnio just to be the most prepared posiible. As another poster said, an echo is a good idea to check for heart complications, which are the most common complication. You definitely need to go where you feel comfortable and have confidence in your team. Give your little one every thing in your arsenal. Also, as someone already posted, surgeries are now done when the patint is more stable, with better outcomes seem from this. My survivor, Lincoln, was not operated on until 3weeks old. Every CDH child is different. I encourage you to seek professionals with experience treating CDH cases, not nessecarily based on national ranking, although there is definitely something to be said about that. Follow your heart, and know you gave you child the best. I wish your family the best for your journey.
ReplyDeleteIf there is a Ronald Macdonald house available, a hospital social worker will be able to set up a room for you. Go visit it before you deliver. I lived for a month at the RonMac in Boise, ID. The staff is great. They are all so kind and caring. I think it is only $10 a night, or something minimal. They are very family friendly also. If you don't have access to a RonMac, ask at the hospital where you will be delivering if there is a similar facility that accommodates NICU parents. A lot of major medical centers have something for the families/parents in the way of overnight/prolonged stay arrangements. If you have any questions or concerns, please ask.
ReplyDeleteHi...I relocated to have my son and would love to email or talk to you about it. I had a two year old daughter at the time and leaving her was almost worse than the feeling of having a baby with a birth defect! It all turned out fine, but I know it is scary. I have heard many stories similar to yours about first appointments being very negative. We went to Dr. Kays in Gainesville and I think if you email him he will get back with you and talk to you about things. It is probably hard for you to think about going that far to have your baby, but at least you could get another opinion that might make you feel better. His email is: david.kays@surgery.ufl.edu . Please email me if you would like to talk ! Mary Abigail
ReplyDeletemaryareinhardt@gmail.com
Hi there,
ReplyDeletejust found your blog from Bonnie's blog. I am the mama to a 22 month old L-CDH Survivor. I guess you could say looking at her today, we are one of the best case outcomes. She is not on oxygen, no delays, no medicines, she is doing incredibly. Even her Xrays 'look' like her lungs are equal and normal. Though, they are most likely not normal on the inside since their functional development was comprised. You wouldn't know it - and she hasn't had a illness go to her lungs yet, so not sure if when that happens if she'll need extra help.. But I tell you all this to give you hope. When I first was told about her condition we were given a 40% chance of survival. I know now that number is WRONG. The national average is 50%, but if you go to a hospital that specializes and seeing more than 1-2 cases a year - you can see survival rates as high as 75-90%. Statistics are meaningless. You have every right to refuse any test and if the doctor makes you feel uncomfortable and doesn't respect your decisions, get a new doctor. This is a difficult enough journey. I say this strongly - do not deliver at a hospital that rushes to surgery. New protocols say that these higher survival numbers are coming because of waiting on surgery. Delaying ECMO and using that as a last resort. Gentle ventilation is the way to go. Make sure wherever you chose to deliver understands gentle ventilation and uses that method. Dr Kays is one of the pioneers of this. I know a mama who fought to deliver here in Portland because she didn't feel good about her local hospitals experience with CDH. It is such a complicated birth defect. Plus you need to feel comfortable and trust the place you deliver. AND you don't want to be in a hospital that needs to transport your extremely fragile baby to another place. There are enough things to worry about through this ordeal than to have whatifs and second guessing the hospital. You need to feel 100% trust in them. This is your baby. It can be a fight with insurance - but there are lots of moms who have been able to deliver at other hospitals. I know one mom who said she would sue them if her baby died after they 'made her deliver' at this other place. That did the trick and she was approved...
Finley's stomach, intestines and spleen were up. Her heart was totally displaced at the 20 week ultrasound. Sometimes there are heart defects too because of this. They will usually do a heart ECHO to determine. We went to UCSF for a second opinion and this was done there. Finley had none. Just because she may have a significant defect doesn't mean she is going to do any worse. Like how if it were small, it doesn't guarantee she'll be fine. There is a little girl, Emerson who was delivered at St Louis, I think - who was missing like 85% of her diaphragm. She is a healthy 4 year old today. This is exactly why you need to be somewhere that sees LOTS of CDH babies.
Finley's surgery was done on Day 19 - once they determined her PH was going down and she was stable. I have heard the number of 3 weeks being tossed around more.. Pulmonary Hypertension is the wild card and what is the scariest thing with this condition. That is why some babies with big defects go home, and babies they really thought would be fine with small defects, don't make it..
Sorry for the long post... feel free to contact me anytime.
Sending love and prayers,
Liz
www.finleyanabelle.wordpress.com
Hi, I am on the CHERUBS website as well- My daughter is 12 days old and being treated by Dr. Kays in Gainesville. She had her surgery in the first 24 hours of life because of her severity- he wanted to try to do her surgery before she needed ECMO, he did not think that she would do very well until she had surgery- he doesn't always do his surgeries that quickly. In her case it was the best thing he could have done. My blog is http://anyamaesstory.blogspot.com/ if you want to read more of our story. Message me through CHERUBS if you want to ask me more questions, I would be glad to!!
ReplyDeleteHi! I got your post on my blog, thank you! I wanted to let you know about a friend at church's blog. She is almost due with a baby boy with the same thing. It might encourage you to reach out to her, or read her blog. The address is familydavises.blogspot.com. I'm so sorry about Sunni's diagnosis and just what you must be dealing with, emotionally, carrying her. I'll be praying for you and for her little body to heal and everything to grow correctly, and for wisdom for the doctors that help her when she comes out!
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