Wednesday, July 22, 2015

Good news and bad news

Warning! Long post! :)

We (Jon, my mom and I) started our trip into Seattle on Monday night so that we wouldn't have to get up at 3:30am to be there on time. We were hugely blessed by one of my mom's friends who opened up their basement/mini apartment to us at the last minute!

Waiting for the first ultrasound (heart)
After an interesting nights sleep (mom and I attempted to sleep in the same bed but her snoring kept me awake and my tossing and turning woke her up!) we made our way to Seattle Children's Hospital where we ate breakfast.

Our first appointment was at 8:30am for the fetal echo cardiogram. I am not super familiar with just the heart so I was able to see a few things but over all just watched and waited.

Once that exam was done we were moved to another room for our regular ultrasound check up. The woman doing the ultrasound was wonderful and explained what she was looking at or for and what she was doing. I was encouraged by what I saw in a few places and couldn't wait for the official information!
In the second ultrasound room

After she was done we waited a while to see if either of the doctors (OB or Cardiologist) wanted to take a look themselves with the equipment and after a bit Dr Bhat (the cardiologist) came in and took a quick look.

As we waited in the meeting room for the big meeting, mom and I worked on our perspective knitting projects for Matthew. I was able to finish his jacket! It still needs buttons but all the knitting is done and the strings are woven in, yay!

Dr Jolly (OB), Dr Bhat (fetal cardio) and a nurse came in all together and sat down to talk about the findings. Dr Jolly started out by giving a quick run over of changes and new information while the nurse and mom took notes.

Let's start with the new information they saw:

It looks like his kidneys may be fused in what is called horseshoe kidneys. They appear to be functioning normally (the bladder is full and the amniotic fluid amount is normal) but are attached at the top.

His belly size seems to be a week smaller than the rest of his body.

They were unable to see something called CSP (Cavum Septum Pellucidum) which is a normal space in the brain. They said it may be that the cysts are getting in the way of seeing it or it might not be there. I don't remember why it being missing would be a bad thing, but it would be so we are hoping that they are simply not able to see it.

He has fluid around his right lung (more details with the heart info).

Isn't he so sweet?
Previously there but changed:

They told us that his chin is now within the range of normal (it had appeared small previously). His Choroid Plexus Cysts have gone from being 2.4x2.5 cm down to 1.4x2 cm! So not only have they gone down in size but his head has grown so they are a lot smaller in comparison to space availability! He also now has appropriate sized genitalia (previously seemed small).

Updates and growth info:

Matthew is looking like he is now weighing 1 pound 8 ounces, which means he has grown almost a pound in 6 weeks! That means that he is still about a week behind in size (from our later due date) but that seems to be consistent (and consistency seems good to me!). His amniotic fluid is normal (important).

The sweater is ready for buttons!
And for the heart (previously not very clear info known): The good news is that he does not appear to have an AV canal and all of his pathways into and out of the heart seem to be working fine! He does have an ASD (normal in everyone but closes at birth, which doesn't always happen in babies with extra chromosomes) and a VSD. The VSD is there and is close to the center of the heart but should be okay (fixable with surgery)as long as nothing changes. His greater vessels are not transposed but are something called DORV (double outlet right ventricle) which means that instead of one from the left side and one from the right side (both near the center) they are both leaning to the right side. They also appear to be fused near the heart (abnormal but probably not a big deal). Also, the left side does appear to be smaller but is still working okay.

The bad news is that his heart seems to be not pumping with as much enthusiasm as it should and there is some possible back flow in one of his greater vessels and the valve on it seems to be thickened (could mean restricted flow into it).

What this means:

Over all he is looking good but looking at the heart, his visible defects do not account for the decreased energy of the pumping effort.  They said that most likely that is caused simply by him having Trisomy 18 (it effects how things work over all). That is possibly a warning sign that his heart may not be able to keep up. With the fluid build up around his right lung they informed us that most likely this is caused by the heart function being low though there are a few less likely causes. They are concerned that if the fluid continues to build up and goes around the other lung or the heart the function of them will be compromised. If it builds up too much around the lungs his lungs will not be able to grow and will always be small. With increased fluid where it shouldn't be, he is also at risk for something called Hydrops which would compromise him.

So over all he is looking good but there are a few warning signs that may mean an increased chance of him being stillborn.

After we tried to absorb all of this we began asking the questions we had come up with over the weeks. As we talked we let them know that even though they have recommended no fetal monitoring during labor and no C-section we would like to have full monitoring and have a C-section performed if he shows that it is needed to keep him alive. They took this super well and Dr Jolly throughout the meeting included the possibility when talking about what things may look like after the birth.

We took him to the zoo after our appointments :)
As far as we can see, right after the birth the NICU team is going to be able to look him over and tell us what they can do for him. They will be able to tell us if nothing is going to help, if he needs oxygen, if he can stay in the UW NICU after being stabilized or if he needs to be transported to the Children's NICU, etc.

We have been told that they will not do any action (to intervene or not to intervene) without us giving consent and will make sure that we know all of his options each step of the way so that we can make the decisions.

Over all we are super happy with our team. They are not simply writing him off and are super willing to work with us no matter which path we take. We are truly grateful that God has provided such willing and wonderful people to work with us!

Our next appointment is scheduled for 8/17 to do an ultrasound check up, that with the OB and meet the Neonatologists! 2 weeks after that we are going to have another fetal echo cardiogram done to see if anything they saw yesterday was a one time thing or if things are changing for better or worse.


  1. Praying for some positive changes at next ultasound. Sounds like you have a great team it's always nice when you, as parents, are a welcomed part of the team. Love the sweater you made for Matthew, his going to look adorable in it!!

  2. Ever in our prayers - Thank you so much for the updates! God is good and we pray He will continue to give the doctors wisdom and understanding.