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.

i've been back to work for a few days, and am already not sure that i was totally prepared to return. it's not the work, just the pressure of performing while i'm not feeling like myself. i've also had to tell several people that Raef is no longer here and that's never comfortable. i end up comforting the person on the other end of the conversation which isn't what i need right now.

nothing feels the same as it did before i had Raef, let alone before i knew we were going to be parents. i know that i should expect them to feel different because i am a mother, but it's so difficult because i don't have Raef here with me.

i see pictures of him, and almost can't believe that we had three long weeks with him. i only say long because those three weeks were some of the most stressful, yet wonderful weeks of my life so far. every day was difficult; not knowing whether it was going to be a good day or a really bad one. that anticipation was enough to make me feel on edge at all times. there are days that i wish i could just drive to Peoria instead of go to work, or be at home all day. even though those days were extremely difficult, i'd give anything to be back in the NICU hearing those beeps and alarms, and crying babies. 

while i'm glad we bought a home, it's bittersweet to return to it every day after work. we have a room meant for our baby that's filled with things that we don't have the heart to unpack.

right now, it's harder to be. it's harder to be a wife than it was before. it's harder to be an employee. it's just harder to feel any sort of normal. i honestly don't even have the patience for the cat that i used to.

i feel this heaviness in my heart, like someone is standing on my chest almost all the time. nothing seems to really take it away. i just want my son. i don't know what i'm supposed to do without him. why was he given to me and then taken away so quickly? what purpose does that serve? did God really need another angel in Heaven? i'm not sure that the thought of that comforts me at all.

people say that God only gives us what we can handle. i'm having a hard time with that concept. i believe in God, and trust in Him but i'm not sure that i can believe that he's decided to pile a whole bunch of crappy circumstances on me right now because i can "handle it." i think that the only way i can come to a conclusion about the why in this situation is through prayer, through contemplation, through faith. and right now, through sleep. i'm truly exhausted.

today marked my actual return to work. i was lucky to have the workday broken up by a wonderful lunch with Becky Huizer. we took an extra long time, and it didn't hurt that she'd locked Mandy out of the house, so we got to swing by Becky's house to let her in. although it's probably the second time i've seen Mandy in my life, i feel like i already know her because her mother is so good at talking her up.

i discovered today during my time in the office that things weren't quite as organized as i thought while i was gone. it's okay. it just means that i have to really concentrate on it tomorrow which won't be a bad thing. i'm alright with having my mind in another place right now.

Reid had an interview today, and it sounded like it went a little better than some of the other ones he's had. hopefully that's a good sign. it'd be such a load off of my shoulders to know that he'll be employed in the fall. we desperately need a new couch, and a second income definitely won't hurt our chances of obtaining a nice, comfortable sofa. ah.

working means having to go to bed at a decent time which i haven't done in almost two months now because we were driving home from Peoria after seeing Raef all day. it seems like yesterday that we had to say goodbye to him. if i close my eyes, i can feel myself sitting in a chair at his bedside. i can feel the breath leave me as i hear the beeps and alarms in the NICU. it's just so hard to believe that it's over.

getting back to normal life doesn't really seem possible. our definition of normal has changed, but we don't know exactly what's different about it yet.

back to it

i'm going to head in to work this afternoon, if only to say hello to my coworkers whom miss talking to, and to assess the damage. i think i need to know what i'm up against on Thursday when i return to work full time. the last time i saw my desk, it was surprisingly clean but BJ's desk was the opposite. mostly because he's been doing all of my work for the last month, i'msure. although it seems that they can manage without me there, i'm eager to get back to it.

i'm not sure if it's too early to go back to work. people have been asking me lately, and i don't have the answer. i do know that to fully grieve, you need more than two weeks. i'll need years, i'm sure. 

i've been able to connect with Reid's cousin Aimee, someone who's been in my shoes, and it's been comforting to hear that the feelings i have are normal. i don't believe for one second that it's a good thing that there are many women out there in my position, or who've gone through similar situations, but i thank God that i'm able to connect with at least one of them. in time, i'll find a support group locally and begin to sort through my feelings.

i thought i'd get a lot of unpacking and organizing done around the house this week while i was off of work, but i ended up doing a little shopping instead. thing

s are coming together around the house slowly but surely (with Reid's help, of course).

i'm really looking forward to this weekend. i want some time with Reid all to myself. i want to continue to make our home feel more like our own. i want to go back to church and praise our Lord with some of the people who have been so fervently praying for us all this time.

reid has an interview today, and another on Thursday. i hope he can find some sense of peace during the day because going back to school this week has been incredibly difficult for him emotionally. adding interviews to that makes for an incredibly stressful week. have i ever said that my husband is amazing? he is. to the max.

Signe is also pretty rad.

yesterday was probably the most difficult day we've had since Raef's passing. it was time to say goodbye to my parents and to Tina. i woke up this morning to a snoring husband and an otherwise empty house. nobody had made the coffee yet, and the place was kind of a mess due to lack of a certain sister.

Toni, Gary, Chad, Julie and Lily leave today. it was so great to have them all here, i hate to see them all leave. we had some really great time together this week.

Lily and Kris being awesome

Leah and Judah came to visit!

the service for Raef on Thursday was absolutely beautiful and more than we could have every asked for. so many people came to show their support and we were able to see with our own eyes how much Raef was loved, and how many people truly care about our family. we've known it in our hearts for a long time, but to see it just kind of brings it all together.

Dean and Andrea Kladder, our dear friends and pastors presided over the service. with their help, we were able to choose scripture passages that conveyed our feelings about the last several weeks of our lives. they gave a homily that had most everyone in the sanctuary in tears including themselves and they were able to do so with the utmost grace.

Dave and Becca Bruner were there to provide some musical assistance. they sang a song that Becca sang to Raef the day he passed away. it was absolutely beautiful. most people commented that they should probably record the song together. judging from the versions of the song available online, theirs is by far he best. Bruners, make of that what you will.

Dave and Becca preparing for the service
(they really did get this together at a moment's notice. and they're just generally awesome.)

there was a lot of this going on.

and, apparently this was going on as well...
each of my coworkers came to show their support. they also had to put up with me during the last month of my pregnancy when i was just generally miserable. they're pretty great.

the best friends anyone could ask for and their parents whom we love dearly.

Tina happens to be the brains behind this operation. without her, we would not have photos of this day. unfortunately, she's not in any of the pictures but i assure you, she's amazing, beautiful, and i couldn't imagine my life without her.

i want to thank everyone who's shown us their support. whether it was sending us a note, making a small donation, coming to the service, sending us dinner, adding us to the prayer list at your church, adding us to your personal prayers, reading this blog, or even just giving us a passing thought, we love you. our lives are forever changed by your existence. to those directly involved in our care the last several weeks, (you know who you are) we don't have the words to adequately express our gratitude to you. thank you.

distractions!

the last few days have been filled with family and friends. we've been blessed to have my sister, Tina come stay with us. Reid's brother, Chad along with his wife Julie and their precious daughter, Lily are also here from Colorado. Reid's parents flew back to Illinois on Sunday night, the earliest flight they could get out of Phoenix. Luckily, Becky and Mary B. drove down to St. Louis to pick them up and bring them home around 12:30 AM on Monday morning.

we've been overwhelmed with the amount of support we've received over the last couple of months. believe me when i say that the things that seem small to others are huge to us. from my boss giving me the time i needed when i was in pain right before i had Raef, to the last glass of wine that Wendy poured for me tonight at her home are most helpful to us. we are truly blessed.

tonight, Wendy held a dinner at her home and invited anyone and everyone to come join us in a small celebration of Raef's life, and the impact that he's had on countless people around us (near and far).

having my parents (both sets) in town along with Tina has helped me immensely. it makes my house feel more like a home to have my family in it with me. Kris and Jon have been here to sit and stare at the floor with us when we have nothing to say. for that, we are forever grateful and know that we have some pretty amazing friends.

it means so much to me that people who never got to meet Raef in person loved him. that he touched so many lives makes me rejoice in his very short time with us on earth.

i'm sure that right now, i'm sort of numb to the emotions related to grieving the loss of my first child. or maybe this is the grieving process. i'm either numb or i'm in denial. i'm distracted. when everyone has to leave us to return to their normal lives, we'll probably break down and need someone to pick us up again. i know that we won't be alone, but i fear the days that lie ahead.

Raef's service is tomorrow. it'll be led by our dear friends, Dean & Andrea. i know that it will be beautiful and it'll help us all to rejoice in our Lord; to remember that He has not forsaken us, that He is still with us.