1.27.2011

on Monday, we elected to have Winn's bladder drained again. we were honestly surprised when our doctor offered the procedure and thought that we would never have the opportunity to do that again. so Monday afternoon, they took me over to the maternal-fetal part of the hospital, and drained off 2400ml of fluid from Winn's belly. the 2400ml part is what i have a problem with. how the heck does that happen to a kid without his bladder rupturing? that's more than 2 liters sitting in my 28 week old baby's belly. the doctors infused about 1000ml of saline around the baby after draining the bladder to give him some room to move around in, and also to hopefully keep my body from thinking that it was time to have this baby.

the procedure was a success. i personally physically felt some relief by way of not having a belly that was beyond its capacity for this child. i also felt some relief in the sense that my child may now have some more room to move, his lungs might be able to practice their breaths, and his other systems might get some relief from the extreme distension of the past several weeks.

at our follow-up ultrasound yesterday, we saw that he is indeed still producing urine, because his bladder is pretty large again (nowhere near as large as the bladder we saw on Monday). this means two things for Winn.

1. his kidneys are still producing urine, and may have some kidney function left (good thing)
2. he's likely to swallow all of that fluid again and put himself right back where he started on Monday

one question that i get with this situation is whether or not our doctor is going to repeat this procedure until he's born. i really don't think that our doctor went into the procedure on Monday with the intention of repeating it. he actually had a feeling that the kidneys would not be in working order and would not have produced urine again therefore not filling up his bladder. the problem with serial bladder taps is that every time you introduce a needle into the situation, you introduce the chance for infection. we know how infection took our sweet little Raef, and we're not really keen on introducing that risk to this child.

i also received a visit from a woman who works in the NICU that i have fond memories of from our first time around. it was actually comforting to talk to her, it brought back some of the feelings of hope that i had two years ago when we were here with Raef. the children's hospital here has built a brand new NICU since we had to stay here with Raef and apparently each kid has their own private room. the same doctors are here, which is actually a comfort to me. i have to be able to admit to myself that the best case scenario for us is that our child will have to spend some time here in the NICU. for a best case scenario, that means that i will have to get used to the idea of being a NICU parent again.

on top of all of this, i'm a patient at St. Francis in the ante-partum unit. i have bathroom privileges and am allowed to shower once a week. i'm still on magnesium and don't exactly feel like myself and therefore have little motivation to do anything of value here. i have every intention to read the bible in 90 days, crochet finger puppets, and hopefully blog regularly. i pray daily for the strength to keep my head up through all of this, i pray that i can see the blessings that surround me every day. the fact of the matter is that i'm in a great hospital, i have exceptional nurses taking care of me every day, and i've even been able to reconnect with a couple of people that we met when when we were here with Raef. i'm truly blessed to have visitors during the week, and can't thank my friends, family, and work family enough for their emotional support during this time.

1.24.2011

the last week of our lives has been a major whirlwind.

Reid left last Monday for Washington DC to train for a federal grant that his workplace is receiving this year. he was nervous going into the training, not knowing the scope of his new role at UNITY and also knowing that I was at a high risk for pre term labor.

Toni and Gary, Reid's parents, decided to postpone their trip to Arizona one week since Reid would be gone, just in case i needed anything. would you know, Monday morning, i needed a ride to work after finding the car battery to be dead, and after breaking down because i could not find my jury duty badge for the week.

by Tuesday of last week, I started to feel some pain, somewhat reminiscent of what i went through with my labor with Raef but i think i tried to convince myself that it wasn't possible that it was labor because Reid was gone and i was only at 26 weeks. i was not going to have this baby while Reid was across the country, and i was going to make it further along than i did last time. 

by Thursday, the pain was too much to bear, and i had Toni bring me into the labor and delivery unity of St. Joe's in Bloomington. they stopped the contractions for the moment and gave me an antibiotic and sent me home. Friday morning i was to see my doctor in Peoria at St. Francis Hospital, so i grimaced through the pain on Thursday night and waited for Toni to pick me up to go to Peoria on Friday. by the time we got to the hospital on Friday, i was definitely in labor and Dr. Leonardi immediately admitted me to labor and delivery to have them try to stop the labor. i was put on a good dose of Magnesium Sulfate to stop the contractions which immediately made me feel like i had the flu, gave me double vision, and made it difficult for me to breathe. 

for the most part, they were able to stop the contractions and Reid was able to fly home early from DC to be with me on Friday night. my mom and reid's mom were with me all day which i was just truly grateful for. i have to admit that i was nervous for a while on Friday that the doctors weren't telling me that they thought they may need to deliver Winn early. i stayed in Labor and Delivery until Monday afternoon when they finally felt like i was stable enough to be transferred to the ante-partum wing of the hospital.

upon transfer to ante-partum, i was in quite a state. i had some of my weakest moments on Tuesday during my first full day of being alone in the hospital, knowing that i'd be in this same room every day until i delivered Winn. as Reid put it, after spending time in Labor and Delivery, ante-partum is kind of like purgatory in terms of hospital stays. it's not to say that the nurses aren't as nice but it's just different, and if all goes right, my stay here will be significant, more than eight weeks!

so now, i'm praying for patience, i'm praying for time for Winn to continue to develop during this pregnancy, and i'm thanking God for all of the people in my life who have once again stepped up and helped to make my life brighter each day. Reid and I would probably have to be put in rubber rooms if it weren't for our friends, family and our faith that God has a hand in our lives.

1.2.2011

now that we've had some time to decompress and reflect on our time in Philadelphia, i think i can say that i'm truly looking forward to the rest of my pregnancy. the doctors in Philly were really good at leading us down the road of terminating our pregnancy, but i know now that God wants us to see and know and hold our son, even if it is painful in the end. 

Winn is continuing to show me that he is alive, and i consider each kick and punch to be a gift. i'm choosing to live in the moment with my son and my husband. i'm not ready to resign Winn to meeting his brother Raef in heaven just yet.

this last Thursday, we met with our doctor in Peoria for the first time since our return to Illinois. Reid was visibly anxious while we were driving to the appointment and while we were waiting to speak with the doctor. i hate seeing the anxiety that this situation creates for Reid, i want this to be peaceful. after an ultrasound, we finally got to see Dr. Leonardi. he sat us down in a meeting room to discuss our options. we were both very relieved to hear him say that he wasn't ready to give up on Winn. his stance was that if this kid has a 5% chance (that's one in twenty!) of living, then we'd give him every advantage, beginning now. 

the plan is to keep me pregnant until i am at 36 weeks and then deliver Winn. only when he's born will we be able to know what his chances of survival are, but for now, we just need to hope for the best. don't get me wrong, i'm not walking around thinking i'm going to have my baby and take him home a week later. if Winn makes it to delivery, it'll be a hard road that lies before the three of us. he'll be very sick; his lungs will be underdeveloped, his kidneys will not function at 100%, and he could have a few other problems that accompany the large bladder that he's sporting in utero. he may not make it home at all, and i acknowledge that that's a possibility.

my intention for the rest of my pregnancy is to live each day in my moment; to relish each movement i feel inside my belly; to enjoy each day with my husband; to recognize the beauty that is life; to thank God for each second of each day. this is not to say that i won't have bad days. i'm sure that there will be moments where i (or Reid) feel helpless, weak, and sad. i believe that that's what makes us human and that's beautiful. 

and so my hope is to stay pregnant as long as possible so that i can give this kid a fighting chance. my hope is that he someday gets to meet all of the people that have been praying for him, and that already have great love for him.

thank you for all of your thoughts an prayers. we treasure them! and a special thank you goes out to Andy and Becky White Newgren who took us into their home for almost a month so that we could see our doctors in Philly. i'll never forget our time with Andy, Becky and Anneke and feel so grateful to have shared life so closely with them for a while.

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.