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