Wednesday, August 27, 2014

Cautiously Optimistic

 We had a doctor appointment today and while we were driving there I told Ethan and my mom "I don't think I can take anymore bad news." I was just praying we weren't going to be hit with another blow.

 We got to the office and my Grandy (grandmother) met us there, they called us back to have the Ultrasound Tech do the first part before the doctor came in to give us a more in depth ultrasound, tell us what she saw, answer questions and hopefully tell us that we got good cells back from our Amnio. I asked the US tech if she knew anything about my DNA results and she said that she heard the baby was a girl for sure, meaning we got good cells! That was the first bit of good news.

 She started giving me the ultrasound and I said "Still no fluid..." knowing we wouldn't have any. The amnioinfusion I was given 2 weeks ago would absorb after 12 hours. She said to me "No, I see some fluid." As she went on she didn't say much, pointed out some features on little Avery and did a long ultrasound. We got a cute profile shot of her which we couldn't get without fluid. She told us how she remembered that last time I had literally no fluid and now she was seeing some. She went to measure the fluid (they measure it in centimeters) she told me I had 8 cm of fluid. That's the low side of normal. I was still low but we had an almost NORMAL fluid level! What could this mean?! She didn't know either... After she left Dr.Solomon came in and said "Well Olivia, your baby is throwing us another curve ball!" "There is fluid!" I said. She said that there was and started to explain that they are also seeing a bowel separate of her bladder now. She thinks that Avery has a urethra and she CAN pee. She still see's a blockage in her bowel so she thinks there is no anus but that can be built. She said that her heart has less fluid around it and is less enlarged and still looks good. Her left kidney is completely not working and never will but her right kidney looks to be normal and working perfectly. Her brain still looks great.

 The doctor said she is cautiously optimistic and that there is hope she may survive. It all really depends on her lungs. I'll most likely be having a scheduled C Section and 2 weeks prior to that I will be getting a shot to help her lungs along. It all really depends on her lungs. If she comes out with stronger lungs that is great. It's a long road ahead and she could still die but this is good news. She will need to have a lot of surgeries. They will need to build her an anus and clear her bowels, they may need to take out her one kidney that won't work (it could also just absorb in her body and not need taken out), She will need her one clubbed foot straightened out, she may need spinal surgery (It depends on how bad her spine is when she is born) and who knows what else... Her brain is perfect though and she has fluid so it's all dependent on me having amniotic fluid and her lung development.  They think there must have been some sort of blockage in her bladder and putting in fluid some how kick started something and made her pee. Thank God.

 Thank you for everyone who has been praying, PLEASE keep praying that Miss Avery's lungs continue to mature and that I keep getting more and more amniotic fluid. I am not expecting anything but I'm so much more hopeful. My baby girl is a fighter.

 I got to talk to a mother on the phone today who's son had Cloacal Exstrophy (which is similar to Cloacal Dysgenesis but not exactly alike) they didn't think he had a chance to live and he's 12 now. He's smart, his brain is perfect and he's darling. They gave me hope too. Lets hope Avery can do that too, that she can pull through.

 Here are the two profile shots we got of her today, she has her hand above her face in one and on her chest under her chin in the other. This little girl loves to have her hands in her face. Every ultrasound we've had where you can see her since the beginning of my pregnancy she has her little hands by her face.


7 comments:

  1. Such amazing news! Avery, you and Ethan remain in my prayers xoxo

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  2. Olivia, your description of your appointment was precious. I pray that God will carry both you and Ethan as you fight for Avery's life! I think she knows her mommy and daddy love her so much and will not give up on her! Much love, Patty Esposito

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  3. We will keep praying. God will always take care of you all. Love you honey!

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  4. I am so honored to be a part, even a small one, with you Olivia! Your strength and maturity are beyond anything I have seen! Continuing to pray and delight with you and Ethan as you find hope and joy in the birth of your daughter!
    Your Doula ,
    Rebecca xo

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  5. Olivia, this is beautiful. I have known in my heart since the get-go that this baby is a girl. See? Sometimes Moms just KNOW things, even more than medical science. I know that our prayers have been heard by God above, and that anything and everything He can do for Avery Faith, He is doing.

    I love you, my darling girl. I'm so proud of you and the faith you have shown by continuing to take your prenatal vitamins, refusal to eat sushi, and pure love you have for this still unborn child who lives in a perfectly sterile, safe place inside your body. My prayers continue to be that her lungs develop, her spine straightens, she stays sheltered in PLENTY of anmiotic fluid so she has room to stretch her legs and kick you! I pray she has hiccups, even, several times a day (as those help develop the lungs as well).

    Whatever lies ahead for her, we will be there with all the love and goodness we can bring as her family, who love her, no matter what.

    I love you. Only your,

    Mom

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  6. O., Grandy was glad that she was able to be with you for this Dr. appointment and learn the news from the Dr. at the same time you got the news of more development, but not any change in the lung development. It seems like the lungs is the focal point, as the bladder, kidney and anus can be handled, if/when necessary. So, the lungs are the critical need for prayers. "Cautious optimism" was the Dr's words...Whatever the outcome, you are brave and performing beautifully. I'm so proud of you. Luv, Opa

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  7. I'm so happy to hear this! Avery is a fighter!!!! She already is surprising everyone! I'm praying!!- Judy Townsend

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