Friday, November 16, 2007

Update from last two appointments

Hi everyone,
I chose not to post an update last week from our appointment because we are going every week now and I thought I would try to combine two or more rather than an update every week unless there is important information to pass along.

Last weeks appointment was pretty uneventful. He said Liviana and I got an "A" for the week. She looked fine considering her movement and heart rate. There was not any increase of fluid which is good. I have mentioned before that is a risk with CDH and can cause other problems as well. He decided we would see him every week from now on. Sure hope that insurance comes through :).

I got a lecture on not doing too much (he does know we just moved, right?) and resting, etc. I tried but it really did not happen much. While Aria and Miles were with us at the appt. they didn't seem to listen to his suggestions for their momma. Despite my lack of taking it easy and not doing too much I feel great, just like my other easy, breezy pregnancies.

This week he checked her heart and fluid level and everything again. All still looks good. She is not showing any fluid in her abdomen and I am not having increased amniotic fluid which indicates she is still able to swallow at this point. Her heart is pushed so far over to the right and he talked about the possibility again that the neonatologists and surgeon may opt to deliver early if it appears her heart will begin having difficulty functioning. I so hope that does not occur for MANY reasons but he threw out 37 weeks as a possibility. That is only 7.5 weeks away! I know that she is better off inside right now and it is also better for her heart and lungs to go into labor naturally. She is currently breech but she flips all the time. If she is still breech when we have to deliver it is an automatic c-section which is not the best thing for her at all. She needs that vaginal birth to benefit her lungs. While they could do a breech delivery they don't want to chance any distress on her that can be avoided.

He said he would like to administer a first round of steroids to me at our next visit, which will be on the 26th of November. These are to help with her lung development. It surprises me he is wanting to do it so early, given the research I have done. I will discuss it with him more on the 26th and see if there is a reason we cannot wait until 34 weeks instead. I cannot believe we are getting so close. It is such a mix of excitement and fear that is hard to describe. The neonatologists are going to meet with us at our appointment on the 26th and I will look to them for input on the steroid issue also.

Dr. L said that my uterus is likely bruised given the pain I am having at the middle/top of it. Of course, this prompted another lecture about activity, etc. Miles has been sick and wanting to be held frequently and I think that is probably where the aggravation came from. There is nothing I can do about it accept rest, which I will TRY to do, I promise.

We meet with our pediatric surgeon on the 20th. I was mistaken about the date/time of our meeting with them. I will update everyone again after that appointment.

Aria and Miles are both coming off of a nasty cold they picked up at the Rainbow House. It was inevitable that they would catch something given the community living situation we were in. They both had a right ear infection (Miles first and only Aria's second) but that seemed to clear up pretty quick.

Some of you know that Miles burned his hand on October 31st on the clothes iron at Rainbow House. We took him to a follow up with our new pediatrician and she referred us to a burn specialist. She was worried about it scarring in the fold of his hand and limiting his movement. We were so worried. We met with the burn specialist last Friday and they said it looked great and was totally healed, no worries. It has taken him this full week to get more comfortable using it, even though he did not have a wrap on anymore. He would keep it clinched and not open it to pick things up. He got used to using his wrist on that hand when he was needing both hands for something. He is doing much better now. He is so accident prone. If there is somewhere to get hurt he will find it. He really needs a helmet and padding.

Aria and Miles were such angels at our appointment today. I was worried because Brad could not be there, as he had an appt. scheduled for him an hour later in Lincoln. They sat there while the doctor did the ultrasound. Aria likes to look at her baby sister on the screen and asked "what's that" about 10 times. Everyone likes them so much and they really were so, so good and made the solo appointment easy on mom.

I think that is all for now. Thanks for stopping by and reading. I hope everyone has a great Thanksgiving break. Aria turns 3 on the 25th, can you believe it? Take care and be safe during this Thanksgiving time.


Shash said...

Oh, Amy. I don't even know what to say. My heart hurts so bad for your family and little baby Liviana. I'm glad to hear of the hope you have. I want to say so much for encouragement. God is control though. I've started going to church and reading my Bible and He is amazing and the great healer. He can guide you and sustain you. You are so strong and the first thing I thought of when I read your message was I was glad you are the Mommy of this little girl. Just the little I know of you I know the reason why God chose you as her Mom. I'll be reading your updates and praying for you. AND REST DARN IT!!! Take care of yourself, Shandy

Elizabeth said...


Your kids are beautiful! Livianna will be just as beautiful! You know you all are in my thoughts, prayers and LUNG FUNCTION CHANTS!

BTW your package shipped today! And know that we are there!

CHERUBS - Congenital Diaphragmatic Hernia Support said...

I just wanted to say that I'm keeping Liviana and you all in my prayers. If there is anything that I can do, please let me know! Hope to see you over at CHERUBS, we have over 2000 CDH families there with tons of info and support. We are all here for you!

CHERUBS, Founder & President & CDH mom
CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support