Back from Children's Hospital (to anyone following my drama train) :(
dairygirl19
member
And my trip to the Children's NICU.
Dh and I are more confused than ever to be honest.
First we get there and the nurse was just completely batsh*t. She was crying harder than me and we hadn't even had anything done yet. She repeated every standard test I just did on Thursday at my regular OB. I didn't feel the need to have this all done again and pointed it out. She made me do it all anyways saying they had no record of Thursday. Dumb. So I caved.
Then we get to the u/s and the lady was very kind and all around amazing. The cardiologist was there and said he saw nothing wrong with baby's heart which was odd for the chromosome issue, but he thought it was a good sign.
Then the perinatal OB was sent in to talk to us and review the u/s. He started talking about the chromosome issue and all this stuff that was wrong with baby, like we hadn't heard it all before. Then he tells me baby is apparently swallowing but not emptying its stomach because it's twice the size it should be. Ok. new development which dr. thinks is bad. Baby also weighs 3 pounds when it should be closer to 4, but is still making progress right along. Then he starts yapping about what he saw wrong with the heart and how it was bad.
Dr. then goes onto tell us everything we've heard before again and be prepared for the worst. When I finally say, "We've heard this already, and I don't understand where this stomach thing is coming from, it's never been an issue in 32 weeks. Furthermore, we just saw the cardiologist he said all was well." He says, "Oh sorry, I never read your case file before coming in here. Didn't know the cardiologist was in here first. As for the stomach it could just be the way the baby's laying. There's not much we can do you for you anyways, you can go back to your regular clinic. Oh and by the way, due to your health I think you should have weekly non stress tests."
Umm...say what doc? I'm healthier than I've ever been. When I point this out he says, "Oh. Usually girls with problem babies are sick so it's standard." Ummm...can we say insurance money and someone didn't read the file?
Let me tell you girls, I'm strong and polite, but I pitched a tantrum of epic proportions. I was so done. That's 7 drs. in 8 months none of which know what the hell is going on. After all, I much preferred to stay at my regular hospital all along but was told I couldn't.
Well my hissy fit got us a hospital case coordinator. She came with us to tour the NICU at Children's Hospital and meet the dr. over there. She was so nice as was the doctor.
We talked with the doctor about what can be done. He said as long as we didn't want any heroic measures, but just basic life saving techniques and comfort care we'd be better off at our regular clinic/hospital. He said since the outcome is so unknown and doesn't look great, it didn't pay seeing as we aren't going to save a baby that doesn't have a chance at a functioning quality of life. As for the stress tests, he said I'm healthy as can be, and we already know the baby is stressed so he didn't know where the OB was coming on that and I should just skip it all together. That and I've been to the dr. more times than I want to be in a lifetime. All these tests have proved nothing, so I'm done with them.
Dh and I just left thinking we'd talk over and see what we wanted for sure.
We then went to tour the NICU with the case coordinator. That about did both DH and I in. It was harder for both us to watch those sick, struggling babies, a good share of which will have low quality of life. It was like we both decided then and there we're better off with a baby in heaven and starting over/moving on than fighting for a lifetime.
So now, we're back to my regular hospital/clinic. We're okay with just comfort care. If this baby was meant to be a miracle, it will be no matter what hospital it's in. If it isn't going to survive, well again, it doesn't matter what hospital.
So that's where we stand. I have to call tommorow and get it all figured out because we need a plan in case I do go into early labor or something.
You can call us selfish or whatever. I'm sure it seems that way. The Dr. at Children's talked a lot about how, it's our life that will be affected more so than the baby's no matter what we decide. That really hit a cord with us. We've both hit the point we're more worried about taking care of ourselves and being comfortable. That whole hospital situation 2 hours away just stresses me out and that's good for no one. We've also hit a point we're we've decided our quality of a normal life has to return at some point. We're both just done. We've been grieving for 3 months and are just ready to move on. What's going to happen is going to happen no matter how many doctors we see.
That's all I know for today. Thanks for thinking of me.
Re: Back from Children's Hospital (to anyone following my drama train) :(
I don't think you are selfish at all! I'll keep you in my prayers as you wait and prepare to make decisions!
Wow. I wasn't familiar with your story until reading this, and I'm so sorry you're going through all of that. I don't know if this is the right thing to say, but where I work we had a couple with a similar situation. Baby was not expected to survive more than a few min and parents did not want any life saving measures. They were all prepared to have a special ceremony when baby was born and to let the baby go from this life to the next. However, baby shocked everyone and came out crying with apgars of 8 and 9. As far as I know that baby is just fine today.
Just know that miracles DO happen and I'll keep you and your family in my thoughts.
This is the best mindset I think you two can have! It, IMO, will produce the least amount of stress. And if anyone thinks you're selfish, or whatever, they can just STFU, because it's not their choice! You two made the best choice for you both and your family, so no one should have a say in anything.
Good luck with the rest of it and stay strong! God bless you three!
Sounds like staying with your local hospital is a good move all around and I'm glad that at least one of the docs at Children's was upfront enough to tell you that.
Keeping you in my thoughts and prayers.
Zach Rance 4 President
God Bless you on this road. I can't even imagine what you are going through.
I am sorry you had to go through this but it sounds like your "hissy fit" had a good outcome in the end. I am glad you guys made a decision and can go back to your old hospital.. you don't need to be so far away with people like the doctor you met today, trying to get you to take heroic measures.
I can kinda understand and empathize with what you and DH are going through. You get so many doctors telling you different things that it gets frustrating and the repetitiveness(sp?) of the info about what's wrong gets to you . We've known about our heart situation for months. DH and I have been tried off/on emotionally for months on what to do and what's going to happen. Things keep getting more and more complicated making things worse. Noone knows exactly what's going to happen until your child is born.
I don't think you're selfish at all. Your thinking about you, your husband, your marriage, and your future. It's your life and your decision and no one else can tell you what you should/shouldn't do b/c they aren't living your life. Any decision is going to be difficult and hard on both of you. Just have to be supportive and there for each other.
I'm sorry about your situation.
It's your choice and comfort care sounds perfect. *HUGS* I know a few people who chose the same path and in the end, it was a much more peaceful way for their baby than all the shots, IVs, tubes, machines, etc.
You're definitely in my thoughts and prayers.
BFP #3 -mm/c @ 7wks, discovered at 9wks, D&C 9/28
BFP #4 5/29 EDD 2/9 - please be our rainbow
I agree with you. You and your DH have been put through the ringer and need to do what is best and easiest for your family without further loads of stress.
I'm praying for your guys and your miracle baby.
Also for doctors who are competent and read your case before meeting with you.
Well. my situation is not the same, but when I went in for my routine 18 week ultrasound (we were already seeing a specialist because I have a seizure disorder) the Doctor told us it looks like the baby had downs syndrom, and a heart condition.
This was very hard to hear, which I am sure you are all too familiar with. So we decided to have an amnio done so that we could find out for sure either way if he had downs syndrom, and we made an appointment to see a cardiologist for his heart.
Well we got a call 3 days later that the prelimanary test results showed no signs of downs syndrom, but that the actual results would take 10 more days. We Finally saw the cardiologist that said that the heart looked fine, and when the final amnio results came in they also looked okay. They wanted to do more testing, however my husband and I felt much like you do that what is will be, and there is nothing we can do to change it. I am just trying to enjoy my pregnancy now and hope that everything will work out "the way its supposed to"
Keep your chin up....doctors are wrong all the time.
You are in no way selfish! ?You have made a decision to take matters into your own hands again. ?These doctors cannot give you any answers until the baby is born, and then the answers may not be easy coming either. ?I can in no way place myself in your shoes, but DH and I have had similar discussion about quality of life for LO ?(we have a couple of friends with very sick children who they will be taking care of for the rest of their lives- and worry about what will happen after they die). ?We would choose to do exactly what you have chosen. ?Your life, your choice, no one anywhere has the right to judge you.?