Thursday, August 1, 2013

Stable is good


Brief Update: No news is good news!
The amniotic fluid levels are still within normal range, so the doctors are feeling hopeful about this little guy making it to this world.  He is looking at a couple of immediate surgeries and probably some time in the NICU, but we are so, so hopeful!

I think he's getting cuter.
The Full Report:
The little squirt and I went back for more extensive probing and pictures at Children’s Hospital today.  I lay on that little ultrasound table for nearly an hour and a half and watched him the whole time.  He was moving around, rolling and kicking for pretty much the entire session.  He likes to keep his hands up around his face and even tucked them into his neck.  I got a great shot of his nose and little nostrils today, which was really cute.  Currently, he is estimated to weigh about a pound. 

His fluid levels are within the normal range.  He has 13 cm of fluid (normal is 8-20ish for this time in pregnancy).  This is what they are monitoring most closely right now because of the impact the fluid has on lung development.

The little guy’s kidneys look much the same as last time.  We were able to see that the cysts that he has on the right side seem to be localized to the top portion of the kidney, which is what we were hoping for.  It looks like the top portion of the right kidney is in pretty terrible shape and might be what is causing all of the problems for the rest of the urinary system.  The bottom of the right kidney is doing a little better and although it is still dilated, Dr. Lee speculated that it might just be the kidney’s compensatory strategy to deal with the top portion of the kidney and that it might be doing better off than we thought.  We did find out that the left kidney is also a duplex kidney, meaning this kidney also has 2 ureters coming down and draining into the bladder on that side as well.  This kidney is not in great shape, but it’s working okay for now.  No ureteroceles or cysts on this side, which is great news.  Both the tissue in the bladder and kidneys (with the possible exception of the top right portion) look really good.  The tough thing about kidneys is that we can’t really track how they are functioning until the baby is born.  So, for now, we will mostly be meeting with the urologist (who is looking at the overall running of the urinary system and making sure urine is exiting) and then we will be following up closely with the nephrologist when the baby is born and throughout his life.  He is the one who would decide if and when the baby would need dialysis or a transplant.

Chris and I were elated when we left.  We even celebrated by going out to dinner.  Whereas a lot of people may still be devastated that their baby’s kidneys have such an uncertain future, we are so filled with hope.  I guess once you hit rock bottom, anything that sounds like a chance really lifts you up.  And while we may still have a rough road ahead of us, we are choosing to look at the bright side (which is so unlike me).  We are so grateful for the prayers and support we have received and want to say—Don’t stop now!  I really believe that the Lord is blessing us with good fluid levels and stable progression and is answering the many prayers being prayed in our behalf.

*We do a fluid check in 2 weeks and go back to Children’s in a month. 

 If you look closely, there is his hand, always right up next to his face (on the right).


3 comments:

  1. He is so cute! What a little trooper! Always in my thoughts and prayers.

    ReplyDelete
  2. Congratulations on another little boy to add to your family. I'm sorry you have to enter the world of parents with special needs children, which is what I spend my day at work supporting. I know all things are possible and that miracles do happen as I look at Lisa and reflect on her amazing fight through her leukemia and BMT in 1996! Who would have guessed the impact she has had on so many? What a tough day you had to go through to handle the initial news by yourself. You are so brave to stand up to the doctor and keep your baby. I have sadly heard and witnessed several "jerk doctor" moments and glad to learn you have now found more compassionate and experienced doctors to work with you and your son. We will hold him and your family in our thoughts and prayers and look forward to seeing what God's purpose is in this situation. If you even need someone to talk with, give me a call. Deb Walters

    ReplyDelete
  3. Oh..and Lisa would think 10/10 is a good birthdate..Adam a bit later in Oct and Karen 11/04..hang in there little man.

    ReplyDelete