11/30 Putman5 Update

Since the shunt placement last Tuesday, it seems that baby has "stabilized". That is in quotes because stable isn't exactly what we'd call an unborn baby with a large mass in its chest. However, it has not grown since Tues and that is great. As far as these things go, the "norm" is to grow fairly rapidly until 26 weeks and then start to shrink around 28 weeks (we are exactly 26 weeks today), and baby is still growing which helps to create a big more space for both the heart and the mass.

The swelling in the head is almost gone (hooray!) as well as the edema of the skin. The fluid in the tummy is about the same, the Dr. was a bit surprised (at our appointment yesterday) that it hasn't gone down more.

Requests:

*That baby's mass would begin to shrink, and we will make it to term for surgery immediately after birth.

*That we would purposefully seek and find opportunities to proclaim God's greatness during our appointments.

Praise:

*Our appointments this week are only Mon/Fri (we haven't had only 2 in a week in the past month, woo hoo!)

*Our Dr. is hoping to see us early next week and then weekly (double woo hoo!)

*This Dr. agreed, a few weeks ago, to take me on as an O.B. patient as well. This is not at all typical (they try to avoid "stealing" patients), but I'm so thankful for God's provision in this area. Before and during this mass discovery I was not feeling particularly well cared for by my other O.B., but I didn't necessarily want to switch to an unknown O.B. for half a pregnancy.

Here is are "before" pictures. One is a cross section, you can see the heart labeled, and the other is "sagital" (lengthwise) showing how long the mass is. The black "holes" inside the mass are the cysts that the shunt is emptying.



Here are "after" pictures (from Thursday morning). Same shots, but with the cysts (black holes) gone, it's a lot harder for us non-professionals (and sometimes the professional) to see the mass. So our Dr. put the measurements on it for us, so those show you the outline.

Friday 11/26 Putman5 Update

Jeremy sent out a few status updates via Facebook on Tuesday, so here I will try to recap Putman5 events this week from Tuesday to today. As for the rest of us, we had a quiet Thanksgiving. Someone from Mom & Dad's church provided the Thanksgiving meal big stress reliever for my Mom and let me stay off my feet. I love how the Lord provides for ALL our needs (and many of our wants!).

We were at the hospital for a total of 8 hours on Tuesday. We had a lot of snow on Monday and roads were bad Monday evening, but The Lord provided clear traffic and we got there safely (we didn't need the chains we had put on the night before). The procedure was at 8:40. The Doctor's went into baby via a thick needle (after anesthetizing my skin and sedating baby first, thankfully!) and inserted the shunt (basically a one way suction tube) into the largest cyst inside baby's mass. On me it was on my front left tummy area. On baby it comes out just under baby's left shoulder blade, in the back. Baby was in a GREAT position for this as it enabled them easy access away from baby's heart. Everything in the procedure went as well as possible.

We were kept for monitoring and had a follow-up ultrasound at 3 p.m. By that time, almost ALL the fluid (black spots on the previous picture of baby) was GONE. There is one small cyst that is not drained because it is not "communicating" (in layman's - connected) to the big one that the shunt is in.

We had a follow up appointment yesterday morning, and the cysts are remaining drained, so the mass is quite a big smaller. We can see the right lung now (left is still quite squashed under the mass and will remain so), the heart is more toward the center of the body and looks huge to our eyes. The swelling in the head has gone down some, and the edema in the body also. The fluid in the abdomen looks about the same, and the Dr. said we would "expect" (as much as anything like this can follow any expected pattern) it to take a few weeks for baby to reabsorb all that fluid. We have also been able to see the stomach. The ultrasound tech surmised that the mass was blocking baby's ability to swallow. When baby cannot swallow, then the stomach is empty and is not visible on ultrasound. Hooray! Baby is swallowing now.

Thank you for your continued prayers. We are so thankful. Short of miraculous healing (which we know God can do) it looks like we'll remain monitored throughout pregnancy and baby will have surgery immediately after delivery to enable breathing and proper lung development. I am praying for 2x a week appointments (or less often) and for the hydrops to be resolving.

Hope you are enjoying a wonderful time of focusing on the Lord "and all His benefits"

This is what happens when it snows in Seattle...

Hilarity ensues.

I had a good time watching this Audi try to navigate the steep hill.



Then a little while later a Subaru attempts the same hill...take note of the car the Subaru slams into.



Enjoy!

11/22 Putman5 Update

Update #1: What a blessing to have the weekend at home with the family (No Doctor's appointments. Spent Saturday picking up in the yard with the kids... good thing because Sunday it snowed. HOORAY! (Some of you may not know... I grew up in Colorado. LOVE SNOW!) Sunday we all got some extra sleep (in shifts).

Update #2: We had an appointment today (deja vu =), and tomorrow are scheduled to have the shunt put in. Tomorrow we are 25 weeks so there is a better chance for viability outside the womb. In the slight chance that something goes wrong tomorrow, we are doing this in the O.R. so that baby can be delivered if absolutely necessary. Dr. thought it was a 5% chance, but just to be safe... The Mommy in me is so thankful we are "doing" something. (But wait, haven't we all been praying? There is my sinful self, thinking our actions are more powerful than prayer!!) And I continue to be surprised at, for me, how draining the appointments are emotionally, mentally, and physically. It is just so sobering and sad to see what we see inside our baby.

I finally thought to and remembered to ask for pictures of this CCAM (Congenital Cystic Adenamatoid Malformation) so you can all picture what it is that is in our baby that is not "supposed to" - medically, not in God's perspective - be there. We have about 10 profile shots but didn't have any of this. These are not as high-res as we can see in the screens, but you'll get the idea.

In this first photo you can see the baby's spine at the bottom of the picture, head to the right. In the chest area, you can see an almost vertical line splitting into two. This is the (thankfully intact!) diaphragm. Everything to the right is the CCAM. To the left, you can see some solid (gray) which is the liver and bowel, and then the black portion (kind of like an ocean around islands). The black is the hydrops, extra fluid that isn't supposed to be there from the heart being strained.



In the second photo, this is a cross section (looking from the head, down into the chest). Our tech labled "LT" on the left side of the body and "RT" on the right. So, the heart should be on the left, but you'll notice it's labeled all the way over against the ribs on the right side of the body. The rest of the cross section is the CCAM. When the heart beats, you can see the CCAM moving too, as they are squished together. I am so amazed at the flexibility and determination our baby is already showing in surviving thusfar. Thank the Lord!

11/19 Putman5 Update

I am pleased to report that we will not have a new report over the weekend! After our ultrasound today, our doctor did not think the shunt placement was necessary. The baby is a little worse since Wednesday but not enough to warrant the risk. We will go back at least next Monday and Thursday and go from there. Part of her decision-making is that our baby is not acting at all sick. Quite mobile and active, so we are thankful for that.

We are still working on living in the now instead of the unknown long-term. However,just to share, long term we will be VERY surprised if baby does not need surgery. For now we are hoping for after birth since the success rate of that is much higher. Our doctor mentioned today that we just keep hoping for the mass to at least stay the same and for baby to keep growing.

Thank you for continuing to lift us up in prayer. We are so thankful to "have a weekend". Thank the Lord!

11/17 Putman5 Update

Good news - no ultrasound appointment tomorrow. Thank the Lord! The office does a great job of being as efficient as possible but with travel time, each appointment has been a 3 hr minimum, so the kids and I will cherish the day at home. Thank the Lord!

Bad news* - Much (but not all) of the fluid has returned into the mass. The swelling is the same in the cranium (but not worse), so we are planning a procedure for early Friday a.m. to put a shunt in that will continually drain one of the cysts into the amniotic fluid. Basically same procedure as yesterday but larger needle and a little more complicated in the interior. Today, baby's position would have been worse for this, and the Dr. actually wants a little more fluid to accumulate to make the procedure easier.

Good news - today the heart was not as "squished" but had a little more breathing room. This is encouraging since Friday's procedure may make the "less squished" the "new normal".

Bad news* - we are pretty weary.

Good news - we have a great high priest who can sympathize with our weaknesses, we have a God who is a "strong tower", and a good Father who knows how to give His children exactly what we need. I have had (and needed) much more time off my feet lately. We have also had wonderful support from friends. Thank you all, so much.

Please continue to pray for our baby and God's will. Also pray that we would be able to do (and wise with) what needs done. Like... you know, loads of laundry! We are both finding the "mundane" a little harder to focus on and do with joy with the underlying anxiety of baby and the desire to "make up for" the time that it is taking away from Connor & Katie. And poor Jeremy ends up doing a lot when he gets home as well. Even without baby in distress, this has been a much harder pregnancy physically for me. Thank you!

*We know that these are "bad news" in terms of our perspective but that God is working all these things for good and rejoice in that!

Nov 16 Putman5 Update

Hello Friends,

I am drained. I didn't mean for that to be a pun, but I guess it is... I'll explain. This morning we went in (again =) we're at 5 out of 6 days, tomorrow makes 6 out of 7) for an ultrasound. Both the specialists within this specialty group were there today, and I had an appointment with both of them so they could brainstorm and work together (apparently this is a rare occurrence, God is really looking out for our little one). They decided to go ahead and try to drain fluid out of the cysts that are within the mass. (The mass had enlarged and the swelling in the head is still getting larger).

In this procedure, the baby got sedated (through my skin/uterus), and they drained the cysts using ultrasound guidance. They removed 38 cc of fluid (wow!!) and did a great job. They were able to get to almost all the cysts within the mass. Baby's heartbeat stayed good, and as I type I can feel him/her moving. I feel like our "sprint" is turning into a "marathon", and I pray that we would remain faithful.

I go back tomorrow to see if the cysts have refilled, measure swelling (hydrops), etc. Thank you all for your prayers. We continue to need them and the sustaining grace God is giving through them.