12.23.2010

It’s been a long week, to say the least!

Monday, Reid and I went to our doctor in Peoria for a checkup only to find that the shunt that was placed a couple of weeks ago had completely stopped working. Our baby was now growing a giant bladder once again and the amniotic fluid level was dropping. Our doctor immediately called the doctors in Philly who got us on a plane on Tuesday morning to meet them at their office at CHOP.

Tuesday morning, we landed in Philadelphia around 9:45am and immediately got into a cab to go to CHOP. Our doctor was ready for us when we got there, and we were seen immediately. The plan of action that was decided was to place another fetal shunt on Wednesday and also do an amnio-infusion at the same time to give the baby some room to roll around in and a chance to breathe.

We waited patiently for hours on Wednesday to be able to go into surgery, only to come out of it being told that they weren’t able to place the shunt due to the position of the baby. They did however still give us an amnio-infusion of 1000ccs of saline (that’s a lot!). We were to go home Wednesday night and come back on Thursday morning to assess whether or not the baby had moved into a better position, or if they would need to tap his bladder one more time to give him enough room to do so.

Immediately, the doctor noticed something on the ultrasound and told us that we had Chrioamniotic Membrane Separation which meant that the amniotic sac was detaching from the uterine wall. They only noticed it in a small area, so there was a tiny shred of hope that we may still be able to have the shunt placed on Monday after a bladder tap was performed today. The problem was, that the chance of this separation resolving is about 5%. Not a whole lot of chance that it would happen, but a small chance nonetheless.

Our doctor immediately gave us our options: 1. Terminate the pregnancy. The baby, without amniotic fluid and with a huge bladder would not have a chance to develop lungs that would sustain life. The membrane separation also poses a high risk of preterm labor and delivery ultimately leading to early infant death. This being a problem because a shunt would not be an option for a few reasons. 2. Do a bladder tap today, and see if the separation resolves itself by Monday. The caveat, if we waited until Monday to see if the separation has resolved itself, we would no longer be eligible for termination and would be forced to carry out the pregnancy no matter what.

The doctors left us alone for some time, in which Reid and I cried and tried to make sense out of having to make a decision such as letting our child go, just like that. Luckily, our friends were available to be on the phone with us, and pray with us, and we also called in some help from the home team here in Philly by having Andy and Becky come to the hospital to be with us. I am so glad that they came, I feel like it helped to ground us in the decision we were about to make. It helped to bring us back to why we had started on this journey in the first place; to be parents.

After asking more questions of our doctor, Reid and I decided that we could not, under any circumstances, terminate this pregnancy. After all, we’ve given the kid a name (William Winn Young but we've been calling him Winn and you can too!), we’ve loved him, we’ve felt him kick and be alive, and we’ve traveled far and wide to do anything we could possibly do to save him. We elected to have his bladder tapped one more time. We know full well that it’ll fill up again in a day, and that eventually he’ll run out of fluid and need to be delivered.

After the bladder tap, the sonographer scanned the baby once more, only to find that the separation was complete. It spanned the entire amniotic sac, not just the small area that we could see when his belly was big. The chances of intervention here at CHOP are now 0% and we’ve arranged to fly home tomorrow to Chicago to be with my family for Christmas.

Our prayer is that we can continue the pregnancy for as long and as safely as possible (both for myself and for Winn), and that we can provide a birth and possible death for our child that is dignified and peaceful when the time is right.

We’re not sure why we’re in this position again and we don’t understand why we’re being tested with such difficult decisions, but I truly believe that God is holding us in his hands, and I feel his grace even though I can’t feel his peace. Come, Lord Jesus.

here we go again

it's been almost two years since our roller coaster of an experience with Raef started, and we've come to find ourselves in almost the same exact situation with our new bundle of joy.

yes, baby Young number 2 is on his way. yes, his way.

at our 18 week appointment on November 24th, where we were to see our baby for the first time on ultrasound, we anxiously awaited the little guy's silhouette to appear on the screen. the technician started scanning the baby, and Reid and i could immediately see that there was a huge black circle on the screen where most of the baby should be. we recognized it as the same condition that Raef had, but didn't say a word to each other until after the doctor came in to break the news that our child had some sort of urinary tract obstruction and couldn't empty its bladder. you can read more about LUTO and how it's treated here.

we were stunned. didn't everyone say that we didn't have to worry about this happening again? didn't they say it was a 1 in 40,000 chance and that there was no way we would ever have to deal with that again?

we were immediately referred to the Maternal Fetal Diagnostic Center in Peoria. we were to see Dr. Leonardi who delivered our son Raef almost two years ago. the next day, we traveled to Peoria and met with Dr. Leonardi for the first time. he was fantastic. we felt immediately like we had an advocate and would soon be on our way to a far away city to see what our options were. Reid and i were happy that the problem was found weeks earlier than in our last pregnancy, and that we were being referred to the people we needed to see much sooner than last time too. we weren't willing to waste any time.

we made arrangements with Childrens Hospital of Philadelphia (CHOP) to fly to Philly on the 1st of December and be seen by specialists on the 2nd. luckily, we have wonderful friends who were willing to put us up in their home during our stay. Becky, Andy and Anneke Newgren have been our home base while we're in Philly.

after a long day of MRIs, ultrasounds, and genetic consultations, we were met by Dr. Nahla Khalek about our options. she informed us that because the baby was sitting in very low amniotic fluid, we were eligible to receive a fetal shunt if lab tests on bladder taps came back favorable in terms of kidney function.

two bladder taps were performed, one the next day, on the 3rd. the first tap showed favorable results. the second tap was performed on the 6th of December and after a night of waiting in sheer anticipation for good results, we got a call from Dr. Khalek on the 7th that the second bladder tap showed favorable results as well. the placement of the shunt was scheduled for the 9th. in the meantime, we were to come in one more time to have saline infused into the amniotic sac to give the kid some room to move around and some fluid to breathe in.

the surgery itself was a breeze for me. i was able to nap through the whole thing. i went home later that afternoon with no complications and was put on strict bed rest. during our stay in the hospital, we were visited by Becky and a new friend, Rev. Bill Golderer, head of staff at Arch Street Presbyterian Church in Philly and also the founding pastor and convenor of Broad Street Ministry in Philly (Arch Street's sister church). it was incredibly heartwarming to have friendly faces grace our hospital room as we stay in a city that's not our home.

before we were released, we got to see our child again on an ultrasound, and his bladder was so small that you could see the rest of him! the doctor confirmed that he did not have club foot, and that his anatomy was totally normal...except for whatever was causing his bladder to stay full.

the weekend was met with Reid constantly reminding me to put my feet up (i'm not excellent at resting) and us doing nothing at all. Sunday night we did however get to eat dinner with Joe Fike, his wife Meghan Whitmer, and their adorable daughter Maggie. so much fun, and a great distraction on a Sunday night.

now, today is Monday, the 13th of December, 12 days after our initial arrival in Philly. the ultrasound performed this afternoon showed the child to have mysteriously grown a huge bladder once again! the ultrasound tech said that it looked as if he had his hand pressed neatly over the end of the shunt that was coming out of his tummy. they believe that he may have just obstructed it for a while, or he could have pushed it all the way into his abdomen. we were warned that these kids like to pull on and play with the shunts so it's not a huge surprise, but definitely a small setback in terms of getting home as soon as we'd like.

the plan is to remain in Philly and go back to CHOP on Wednesday morning to see if the obstruction was purely the baby's fault and has been corrected, or if they need to do the surgery again.

we're so incredibly lucky to be in Philadelphia. we are surrounded by a community that cares, and friends from home, it's pretty sweet actually. that's not to say that i can't wait to get home to my nice little house, family, job, and adorable cat, Signe.