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kwilliams

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kwilliams
, 02-25-2013 at 02:29 PM (2180 Views)
I go to the doctor again tomorrow. Its just the ultrasound specialist and I doubt it will take very long, there's not much new they can tell us. I am still kinda going back and forth on the second opinion thing. I really don't know what to do about it. I was told that doing a fetal MRI won't do any good and won't tell them anything more. But if its a better scan, why won't it give more detail? Does it make a difference? Who should I even ask about this since no doctor in Oklahoma will do a fetal MRI? Are there other scans or tests we should be doing now before she's born to be better equipped to help her after she is born? These are questions I have not received an answer to and don't even know where to look or who to ask about it now. I've had a couple bad days lately. I find myself being more prone to a pessimistic attitude now than before we saw the heart doctor. I don't like feeling so down about it. I feel very torn. We shared a moment on Friday that gave me hope for awhile, but its so hard to hold on to for long. I had a rough week last week with a lot of stress and worry about life in general, not just her. But when Friday rolled around I felt a little better just because it was Friday. I decided to take a bath to ease some of my achiness. While sitting in the tub I thought a lot about what had been going on with her diagnoses and all the feelings I'd been experiencing because of it. I had one hand on my tummy when I told her that she needed to grow big and strong right now so she would have the strength to prove all those doctors wrong. I remember I said "Please grow big and strong for me" and then had to stop so I wouldn't choke up. But I left my hand there and I felt her push her little hand or foot up against it. She just held it there almost in a gesture of reassurance. And we sat there touching like this for only about a minute. But to me it felt like the world. She is still very active and even feels a bit feisty, which I love. But I still find it so hard to reconcile these small things to the outlook the doctors seem to see. What if she really doesn't make it. What will these moments mean then? How much more will it hurt to have had these moments and feel optimistic at all if the worst happens? How does one cope? My husband and I love kids. I've always wanted a large family and after having our own, we had planned on even adopting. I work with kids every day, he coaches, to us there is nothing worse in the world than losing a child. So how are we supposed to deal with this? My current prayer is just that she will be very close to 2lbs. when we go tomorrow. She needs to get bigger.
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  1. Chris and TracyMeats's Avatar
    (((HUGS))) Kathryn. I hope you have a good appt. and not an appt. to leave you feeling bad. The fetal MRI's will just give doctors more of a whole picture of the baby and will also give more details that an ultrasound will not give, many times it will be clearer on what the baby is facing after birth. But, they are not exact either and some doctors don't think they are necessary. All over the US, some doctors do them and some don't. You have done the fetal echo., so there really isn't anything else you can do test wise. If you want a second opinion, you can always call some of the bigger CDH/Children's hospitals and talk with them. See if you can send your ultrasounds/echo. to them and get their opinion. You would have to go get copies of these from the doctors, which could be a pain. They are your records and you have a right to a copy of them, they may charge you a small fee. In these days, many of these test results can be emailed. Dr. Kays at Shands in FL will give 2nd opinions over the phone, he will call you back if you leave him a message.

    You and your little girl will always have a special bond that only you and her will share. I can't imagine losing a child and I am not able to give advice on how to prepare or deal with an outcome like that. I am here to listen, if you need to vent or want to talk. Praying your little girl has grown bigger and stronger since the last visit. Praying for your little girl's miracle.
  2. amandaschaefer's Avatar
    Oh how your blogs strike home to me...Feeling worn, pulled in a million different directions, wishing for that "ignorance is bliss" type pregnancy again...I feel for you bc I am also there. I just wanted to share with you that I would find a Children's Hospital that will do the Fetal MRI. When they did the echosonograms of my son (who has severe right-sided CDH with liver completely up)...they only found one lung and they couldn't get a clear picture of where everything was...So the news was always very bad after each of the sonograms...I felt defeated and like I needed to plan for a funeral, that there was no hope. It was so heartbreaking to always hear bad news after bad news...Once we were referred to a Children's Hospital they decided to do the fetal MRI so the surgeons could get a better idea of what we were dealing with. That's when they saw 2 LUNGS...Much better news than before...Unfortunately, both lungs are very under-developed..but at least we got some "light" at the end of the tunnel! The surgeons and the fetal health center (in the same hospital) that I see on a weekly basis have now come up with a "plan"...Trust me...this will help ease SOME of your worries once you feel like you can come up with a plan to help your daughter. Many thoughts and prayers your way...Please know you are not alone! CHERUBS is such a great community to find advice/help
  3. amandaschaefer's Avatar
    I also wanted to add that I'm located in Kansas...pretty close to your neck of the woods! When I was looking for Children's hospitals I was referred to one outside of Tulsa (I'll try to find the information again) and send to you. How far along are you? Are you seeing a regular OB or going to a fetal health center? Honestly, my regular OB here in my hometown and the original hospital where I was referred to for an echosonogram and where they found the CDH just didn't seem that experienced in CDH and always left me feeling completely drained bc I'd always leave with worse news than before. Find a hospital that is comfortable with caring for CDH babies! It's hard but I travel once a week almost 2 hrs away to see a high-risk OB at the fetal health center where I will deliver my son in case he needs ECMO. I teach and my days are dwindling down fast, but at least I know I'm dealing with specialist who will do everything they can for my son! Sorry to keep rambling!
  4. CaseyFBarnhill's Avatar
    I actually just went to Miami hospital this monday after already seeing a specialist. The specialist was the one that actually recommended miami, because they do inuterual surgery there. after hours , and hours of sonograms , and echosonogram they requested that I need to do a fetal MRI. With the regular sonograms they can see pretty much everything that is going on, but for some reason they have a hard time seeing how much of the intestines are actually in the chest, so they just like to get a better picture. Now I have to do something like the balloon for my son do to his lungs being extremely crushed, so anything else they can do to make it easier on them I concur with.
  5. kwilliams's Avatar
    Quote Originally Posted by amandaschaefer
    I also wanted to add that I'm located in Kansas...pretty close to your neck of the woods! When I was looking for Children's hospitals I was referred to one outside of Tulsa (I'll try to find the information again) and send to you. How far along are you? Are you seeing a regular OB or going to a fetal health center? Honestly, my regular OB here in my hometown and the original hospital where I was referred to for an echosonogram and where they found the CDH just didn't seem that experienced in CDH and always left me feeling completely drained bc I'd always leave with worse news than before. Find a hospital that is comfortable with caring for CDH babies! It's hard but I travel once a week almost 2 hrs away to see a high-risk OB at the fetal health center where I will deliver my son in case he needs ECMO. I teach and my days are dwindling down fast, but at least I know I'm dealing with specialist who will do everything they can for my son! Sorry to keep rambling!
    where are you located? I have been referred to St. Francis Children's Hospital in Tulsa for delivery since the CDH has caused her heart to be small on one side and they have the heart specialists right there. I have been seeing Dr. Blake in Tulsa. She is a perinatal specialist. I am 27 weeks and starting next week I will be going to her every week for testing to make sure the baby is not distressed so we can hopefully deliver at full term. I travel about an hour down there each time. How far along are you? What grade(s) do you teach? Are you going to Tulsa for appointments?
  6. amandaschaefer's Avatar
    We are located closer to Kansas City...it's still 2 hrs away...but we ended up going to Children's Mercy in KC, MO..I'm pretty sure it was St. Francis that was on the list of referral centers for CDH...so you must be in a great place! We found out at 25 weeks and let me tell you that those first few weeks are nothing but doom and gloom...It's good you are starting weekly testing...I started that at 28 weeks as well and that is kind of stressful too...bc one sonogram can be great and the next time not so great....but look on the bright side...you get to see your baby A LOT...it's always reassuring for me. Now I'm going twice a week (1 time in KC and 1 time back home)...I teach 6th grade Social Studies...and luckily my job has been very understanding...I just hate missing so much school. I also have a 1 year old...and it's hard to split my time...Definitely feel torn in a million different directions!
  7. amandaschaefer's Avatar
    I should also mention that I'm 32 weeks...It's literally taking it day by day...week by week and hoping to get closer to that due date!! How did your Dr's visit go?! I'll be thinking about you!
  8. kwilliams's Avatar
    That's awesome that you are so close to due date. We found out at 21 weeks about the CDH. I have a 4 year old boy who is always with me, plus three stepsons every weekend. So I understand about feeling torn. I'm a para for 7-12 grade special ed. I have been so worried about going over my allotted time off. But luckily I can do a lot from home and get some comp time for it. You will have to send pictures once your baby is born, I'm excited for you and will be praying for you