little mama plus two

my mission statement

2011-06-04T11:30:00.000-07:00

recently, our small group was tasked with creating personal mission statements for ourselves. we've been studying a series of books aimed at helping us figure out where we fit in to the big picture of this world, and where God shows up in our lives. There's such a diverse group of women in this group...teachers, a pastor, an office manager, a bank teller, a librarian, and students that it's never boring to hear them explain where they've witnessed Jesus Christ in their lives.

i'd like to think of my mission statement as more of an intention statement. i believe in living a missional life, but i also believe that without the proper intentions, it may never actually happen.

my intention is to live a life that shows others that i know that i belong to God, not my parents, my husband, or my children. i intend to live in my moment as much as possible. as don Miguel Ruiz writes in his book, The Four Agreements, i intend to be impeccable with my word, to never take anything personally, never make assumptions, and to always do my best. if you haven't heard of or read this book, you'd be doing yourself and those in your life a service by picking it up. it's a fast read, and something that i guarantee you'll keep by your bedside or on your coffee table and reference frequently. it was recommended to me by my sister who learned of it through her life coaching.

i believe that if we are always doing our best, we're taking advantage of every opportunity to share God's love with the people that we come in contact with every day. we have all been given certain gifts, and using those gifts to glorify Him as often as possible is something that i think we owe to God. God never stops loving us, never stops working in this world, so why should we?

this isn't to say that i'm always on my A game. i'm not. i'm just on a mission to make myself more aware of the reason i'm on this earth. i'm always striving to not live in fear, worry, or anger because those are things that have to do with either the past or the future, not the moment that we are presently in. when i read that last line, i think of how scientists somehow determined that it takes a considerably larger amount of energy to frown than it does to smile. i believe that the same thing goes for living in fear, worry, and anger. those things make me tired and stress me out beyond belief. living in my moment, i experience more genuine laughter, tears, and relationships than would be possible if i were living in anger over something that happened to me in the past, or worry and fear about what is to come.

for me, it comes down to the relationships that i have with people in my life. they add a richness and fullness that could never be possible if i lived in my own little world and let the sadness of my life overtake my moments.

sure, i'm sad that both of my sons have passed away and that i'll probably never be able to carry another child again inside my belly. that's incredibly sad for me. on the flip side, i think of my friends and family that are expecting children, the sister-in-law who could be delivering our nephew any moment now, and the immense amount of love that i have to share with those people. what if we were lucky enough to be foster parents, or adopt children someday? that would be amazing, wouldn't it?

sure, i'm sad that right after finding out that Winn was doomed to the same fate that Raef was, my dad was diagnosed with stage four lung cancer. but the reality is that i've spoken to my father more in the last nine months than i had in the last five years. these things are not happening to me, they are just happening, and to not take advantage of every moment that i have with my father would be selfish and foolish, and not something that God would be proud of. it's not like God stops noticing what we're doing when we stop noticing that he's in our lives.

it looks like i have some pruning to do here to be able to pare this statement down to something that could be delivered in a line or two, but there will always be time for that.

after

2011-02-24T16:48:00.000-08:00

Reid has been making this joke ever since i was admitted to St. Francis for pre-term labor that our life was like Groundhog Day. too many things happened this time around with Winn that were eerily similar to our experience with Raef. never mind the fact that Winn had Prune Belly just like his big brother, something we thought could never happen to one of our children again.

to start, i was admitted to the hospital on the Friday of my 26th week of pregnancy. i kept making it a point to tell Reid that he didn't have to worry about going to DC because i wasn't going into labor in my 26th week. i was wrong. the same nurses were even taking care of me the day i was admitted that took care of me when i was admitted with Raef. it was almost comforting, even though i wasn't feeling my best because of the drugs that they were giving me.

this time, it was Reid that got to hold our baby while he took his last breaths and passed away. i can still see us in the operating room while it was all happening. it's so surreal. needless to say, we came home from the hospital to a plumbing problem...just like last time. i'm sure i'm missing something, but it's enough for me.

the day i got home from the hospital, i began to have trouble breathing. around 9:30 pm, i decided that it was worth a trip to the emergency room so Reid helped me drag my swollen legs to the ER to find out that i had pneumonia. how does one get discharged from the hospital after surgery with pneumonia? i was given a super dose of antibiotics and sent on my way. looking back, at that time i felt like i would never feel better. emotionally or physically. our friends came over to keep us company and i could barely breathe or keep my eyes open, let alone enjoy any one's company.

by Saturday, i felt well enough to be able to appreciate and fully experience Winn's memorial service. Dean and Andrea did a phenomenal job honoring Winn with the service they put together and the band played so beautifully. it was perfect.

now that our parents have all gone home, and things have quieted down, i feel like it's time to consider returning to my previous life. i'm trying to figure out how/when to go back to work and what that means for me. Reid has already gone back part time and it kills me every time he leaves. it's amazing how attached you can get to someone when you face personal tragedy together. i do expect to find our new normal at some point, but it's scary to think of what that might be, and i'm pretty sure i'm not only grieving the loss of my child, but the loss of everything that goes with that, the loss of what could have been.

2.13.11

2011-02-13T21:33:00.000-08:00

it's incredible to think of what has transpired over the last months, weeks, and days.

on Friday, our doctors agreed to drain Winn's bladder one more time. i was relieved, especially after seeing how much fluid came off of his bladder the last time they did the procedure. luckily, my mom was able to come down early in the afternoon on Friday and spend the day with me while Reid had to be at work. i didn't think it'd be a big deal for him to be at work during the procedure given how smoothly it's gone in the past.

right before they brought me up to the ultrasound room, i began to have pain that was indescribable. they'd given me Demerol to try to curb it, and i'd been taking Norco during the day to try to get a handle on it as well. when they started the procedure, the pain intensified and i almost had to ask them to stop everything. they managed to get 1000 ccs of fluid off of Winn's bladder and then they stopped because i was having contractions during the procedure. it was awfully painful, and i consider myself to be someone that can keep going through a considerable amount of pain without bringing things to a halt.

i was quickly transferred to Labor and Delivery, and my magnesium sulfate was turned back up which made me feel sick again. my contractions did not space out, and they were becoming stronger as i was having to try to breathe through them. luckily, my doctor (Dr. Leonardi) came in on his night off to help me out. he held my hand through the contractions, and was part of the team that ultimately made the decision to perform a cesarean section that night.

when the doctors got in to the surgery, they discovered that the old incision on my uterus from my first son had ruptured and my uterus was open already. this is one of the reasons that i was put on bed rest here at St. Francis and not at home. this was a serious risk to my own health and to Winn's health as well.

the doctors were able to get things under control and they delivered Winn. right as they were taking him from my body, we heard a big splash as his bladder ruptured and spilled out into the operating room. it was a frightening sound. a neonatologist was standing by and immediately took Winn and Reid to the stabilization room. the extent of Winn's injuries and deformities due to his condition prevented the neonatologist from being able to intubate Winn.

Winn was handed over to Reid who was now at my side in the operating room. we watched him take a few breaths on his own, and we watched him pass from this world into heaven.

it was actually one of the more peaceful moments of my life. it's what i asked for if things were to turn out that way. we were able to spend a few minutes with our little miracle before he left us for good. i believe that God granted us that comfort for a reason.

we were able to spend more time with Winn before they needed to take him to the morgue. by this time, not only was my mom with us and able to hold her grandson, but Reid's sister, Kara and her husband Jeremy were also with us at the hospital.

of course, i wish that everyone special in my life who loved Winn were able to be there and to hold him, but i also truly believe that this was meant to transpire exactly as it did. it was peaceful and dignified. our doctors were there to offer their condolences and help support us during such a difficult time.

i am still in shock that this is what my life has become. i've already said hello and goodbye to two of my baby boys. i still don't have a child at home. i'm not sure where that puts me in the motherhood spectrum, but i can say that Reid and i did everything that we could possibly do for Winn to try to give him the best possible outcome. that is something that i can feel comfort in. that alone will help me sleep at night for a while.

1.27.2011

2011-01-27T12:26:00.000-08:00

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

2011-01-24T07:41:00.000-08:00

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 determined that i had a UTI (which i had when i went into labor with Raef) and that i was indeed contracting. 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

2011-01-02T12:32:00.000-08:00

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

2010-12-23T14:35:00.001-08:00

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

2010-12-13T16:12:00.000-08:00

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.

2009-03-22T20:41:00.000-07:00

this morning while i was stepping out to get the paper, i had a slight epiphany. i think i realized one of the main reasons that i've been feeling stressed about things between Reid and i since Raef's passing.

i realized that the weeks leading up to and after Raef's birth, Reid really had to take care of me. i was in a lot of pain and on bed rest before he was born, and Reid really picked up the slack. he wouldn't let me overdo it. then after Raef was born, i was recovering from a cesarean section so again i was very limited in what i could do. Since Raef died, Reid hasn't been taking care of my the way he was because i'm physically better and can do things for myself. i think that's what's making things feel weird. for so long, Reid had to care for himself, me, and our baby. now it's just the two of us and things are supposed to be getting back to normal.

obviously, Reid's student teaching had to be put aside for a while after the birth. he wanted to be there for Raef every second that he could. and he did. Reid was so faithful to his son. he took notes at Raef's bedside during rounds, he insisted that his son was comfortable, took his temperature, read him bedtime stories, prayed for him, and told him how much he loved him.

i know from my own experience that being a NICU parent truly takes everything you have to give if you're willing to give it. Reid gave 100% to Raef and to me during those few weeks that we had with our son. now, it's back to school. back to creating lesson plans and grading assignments at home. our time together is filled with all of the things that fell to the wayside for so long and it feels crowded; like i don't fit into the schedule right now.

the school year is more than halfway through, and summer break threatens to take away all of these distractions from Reid. i pray to God that Reid can find solace in God's grace. i hope that through the sorrow, he can see that God is still with him; that he has not forsaken us.

this weekend was really difficult for me, personally. i've been thinking of Raef often. when i close my eyes, i can see his perfect face so clearly. i can't believe that we created such a great little boy; it's far beyond what i could have imagined or asked for just eight months ago.

i've been thinking lately that it's not even my due date and i've already given birth to my son and lost him. he's not even really supposed to be here, yet he's already been taken away. i can't bear to think of what may have happened if i could have carried him longer. i just can't let myself think about it. i can't think about having other children, it's just too painful. for now, i need to try to live my life, grieve, and begin to heal.

2009-03-19T20:08:00.000-07:00

i'm having such a hard time adjusting to our new lives. nothing feels like it used to. everything takes more work on my part to feel even half normal. i know that once you're a parent, nothing is the same. but usually, you still have your child with you to distract you from how different everything is. our marriage feels different, my body feels different, and life in general is just not the same. it doesn't seem fair.

i talked to Raef's doctor yesterday. she informed me that the preliminary autopsy results indicated that Raef most likely died of a serious infection. the bacteria that she found is called methicillin-resistant Staphylococcus aureus or MRSA.

MRSA is very dangerous for a preemie to contract, and some are even born with the infection. his doctor didn't say that she had any idea of how he got MRSA, and it doesn't really matter to me because finding out exactly what infected my son isn't going to bring him back.

my conversation with Dr. Clark was nice. she told me that she thinks of us often, and that we're still in her prayers. she said that even though she wasn't Raef's doctor for very long, that every time she passed by Raef's isolette, she could feel love. she said that she was impressed that Reid and i were so involved in Raef's care. i can't believe that more people aren't involved. these are babies for crying out loud.

they'll have the results of the autopsy in about a month. at that time, Reid and i can decide whether or not we want to go to Peoria to talk to Dr. Clark about the report. i'm not sure that i want to do that. only time will tell.

right now, time is telling me that it's past my bedtime.

2009-03-16T18:37:00.000-07:00

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.

2009-03-12T19:20:00.000-07:00

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

2009-03-11T06:59:00.000-07:00

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.

2009-03-09T06:18:00.000-07:00

everywhere i look, i seem to run into things about motherhood. it's like a huge stab in the heart every time i see a pregnant woman, tiny infants, and the baby section in stores.

i know that technically i'm a mother, but i don't feel like i had a chance to actually be a mother to my child. his time with us was so short, and in that time, i never heard him cry. i never changed a dirty diaper (although i changed many a clean diaper) or dressed him in any adorable clothes.

i'm having a hard time dealing with the fact that we bought a house days before i gave birth to Raef and i was never able to bring my baby home. our home feels empty even though i never knew it as the home i wanted it to be.

i felt guilty during the weeks before and after i gave birth to him for not registering for baby things. i felt like i was telling myself and everyone around me that i didn't think my baby would survive. the truth of the matter is that i just had a feeling that the worst would happen. i had a feeling that i would never have the chance to breastfeed my child, or walk down to the farmers' market with him.

i believe that people are brought into our lives for a reason, and i'm searching for that reason with Raef. if it were only so that i could experience a new kind of love; mission accomplished. i don't think that's the only reason, and i'll be searching for a reason these coming days, weeks, months, and probably years.

i'm not sure how to cure this silence and emptiness i feel in my heart, or if it'll ever go away. i just keep telling myself that someday, i'll be able to think about being pregnant again without wanting to cry, or remembering the pain (both physical and emotional) that it brought me the first time.

2009-03-07T06:53:00.000-08:00

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!

2009-03-04T21:39:00.000-08:00

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.

2009-03-04T06:32:00.000-08:00

Raef's obituary was in the paper today:

Raef Garrett Young

BLOOMINGTON - Raef Garrett Young, 23 days, Bloomington, died at 9:06 a.m. Sunday (March 1, 2009) at OSF Saint Francis Medical Center, Peoria.

His memorial service will be at 4 p.m. Thursday at Second Presbyterian Church, Bloomington, with the Revs. Andrea and Dean Kladder officiating. Visitation will be from 2 to 4 p.m. Thursday at the church.

In lieu of flowers, memorials may be made to the family or to Second Presbyterian Church.

Calvert & Metzler Memorial Home, Bloomington, is in charge of arrangements.

He was born Feb. 6, 2009, in Peoria, son of Reid Alan and Kara Beth Verley Young.

He is survived by his parents, Reid and Kara Young, Bloomington; paternal grandparents, Gary and Toni Young, Bloomington; maternal grandparents, Bill and Carol Verley, Lindenhurst; and Susan Verley and Gary Karrow, Lake Zurich; paternal great-grandmother, Winnie Woodmansee, Bismarck, S.D.; maternal great-grandparents, Irene Verley, Arlington Heights; Jerry and Betty DeBruyne, Hainesville; and Marion and Marion Campbell of Indiana; and many aunts, uncles and cousins.

Raef's parents thank the doctors, nurses and staff in the NICU at OSF Saint Francis for their expert medical care and bountiful compassion. Also, they thank family and friends near and far for continued prayers, love and support.

Though Raef's time with his family was short, the love he brought into this world will be known by every life he touched.

Raef will never suffer in the arms of his Lord and Savior.

2009-03-01T19:46:00.000-08:00

we had to say goodbye to Raef this morning. we lost him at about 8:30 this morning to some sort of bacterial infection that overtook his tiny immune system very suddenly. this has all happened so quickly that i'm sure i'm not fully processing the situation. i know that my son is now with our Heavenly Father, but i don't think i comprehend that we can't see him tomorrow in the NICU.

we got a call at 7:00 this morning from Raef's neonatologist saying that around 5:00 AM, he suddenly didn't look like himself. he'd lost some of his color, was not as alert, and seemed to be in distress. she told us to come to the hospital. luckily, my very good friends Laura and Joe were staying with us, and they quickly got up and started driving us to Peoria. on the way to the hospital, we got two more calls. one from a nurse asking how quickly we could get there, and another from our doctor telling us that they were performing CPR on Raef, and that we needed to be there as soon as possible.

when we got to the hospital, Reid and i ran to the NICU, our doctor was walking in at the same time, crying, bringing us to the bedside. she was right. Raef didn't look like himself. he didn't look like the colorful, alert boy i left last night. they took him off of the ventilator, and put him in my arms where he took his last couple of breaths before leaving us. we both got to hold him for quite some time.

family and friends began arriving not long after he passed. we were able to take him into a room where we could be alone with him, away from the chaos of the NICU's beeps and alarms. we gave everyone a chance (or two) to hold him, to kiss him, to spend some time with him.

we took our own time after all of this to be with our son. we sat with him, prayed, cried, and told him how much we loved him. we told him how much he was loved by everyone in the NICU. we told him how many lives he's touched already and how he's changed our lives forever. we know that he's in God's hands now.

Reid and i walked him back to his isolette, and laid him down to rest. his nurse put his footprints on his birth certificate for us, and gave us a memory box, and his belongings from the NICU.

we've been home now for a while, and everyone has left for the night. we're anxiously awaiting a call from Reid's parents who are coming from St. Louis so that we can see them. we don't know what to do next, we're not sure how we're feeling or how to go about our lives just yet, and we're very tired.

we thank everyone for their prayers of support, healing, and love for our precious son. we love you, and don't know where we'd be without you.

2009-02-27T21:14:00.000-08:00

our team meeting didn't go quite like i'd hoped it would. the doctor didn't have any fluffy, wonderful news for us, and one of the surgeons we really wanted to talk to didn't show. instead of good news, we heard a lot of things that we already knew, were told that they've basically done all they can do in terms of Raef's GI problem, and that barring surgical options that they aren't aware of, they don't know what to do next. the phrase "quality of life" came up and i broke into tears.

what's a mother to do when the quality of her son's life is at stake? who defines quality of life? it can't be the same for everyone. even so, i'd hate to be the cause of my son's suffering yet i can't imagine our lives without him. i know they're trying to prepare us for the worst case scenario, but i have to wonder how close they think we are to that. is it days away? weeks? months? we still don't know.

needless to say, there were a lot of tears today. mostly mine.

a couple of positives worth mentioning; we got to kangaroo Raef for the first time today. it helped tremendously that Raef's primary nurse, Deb, and his other favorite nurse, Linda were working today.

i can't quite describe how amazing this was. skin to skin, just like it was meant to be.

when i see this, i just know that Reid was meant to be a father.

we each got to hold him like this for almost an hour. i seriously can't thank our nurses enough. without them, we would not have had this experience. no other nurse has offered to help us hold our son.

another positive from today is that Raef went down on his high pressure on the ventilator by 12 points. last night when we left, it was at 32, and tonight when we left it was at 20. to put it into perspective, he's been at nothing lower than 28 so far and in one day he went down to 20. pretty great. one main reason for this is that earlier in the day when Deb was suctioning his mouth (he drools a lot, and gets sticky spit in his mouth quite frequently) his vent tube came out. they replaced it with a bigger tube because he's gotten bigger since he's been there, and they were able to adjust his pressure right away. Reid and i had noticed for the last week or so that there was a pretty significant air leak around his vent tube. he sounded like a duck.

overall, i can't even say what kind of day we had. Raef's health = not so great but not so terrible. adorableness factor = skyrocketing.

i'll leave you with some adorable pictures.

of hypothyroidism and more...

2009-02-26T20:32:00.000-08:00

i decided to stay home this morning to take care of some things in town. i desperately needed a haircut, and some rest. after my haircut, i decided to try to distract myself by walking around Target. i came upon the baby section, and was overwhelmed with the thought of thinking far enough ahead to Raef's homecoming, and the need for baby items. i couldn't look at any of the stuff and had to leave. i hope to get to the point where i'm happily planning the color scheme for the nursery. i can't think like that right now so it'll just have to wait.

the worst news we received today was that Raef has hypothyroidism. they've already started him on a daily dose of medication to thwart any problems that it may cause.

tomorrow is our team meeting. i'm anxious to meet with all of the doctors because i'm nervous to hear what they'll say about Raef's condition.

he had a barium enema today to see why he hasn't pooped yet. we should have the results of the test tomorrow, and hopefully we'll be able to give him a medication to make him poop. the nurse seems to think that there are stools there, but they're just compacted in his colon. only time will tell. what i'd give for a dirty diaper!

when we arrived, Raef had a cute hat on, and was sucking on a pacifier. it was pretty adorable. this afternoon, we were also greeted with a note for Raef from his cousin Tyler.

warning, the following images are cute to the zoo.

hold on, it gets better.

i'd have to say that the adorableness factor skyrockets with the addition of the cut-out cow.

Thank you, Tyler! both of these things are now taped to Raef's isolette so that he can see how much he's loved.

have i mentioned that i'm obsessed with my son's feet? they are perfect. i can't wait to have them all to myself! just look at those toes.

i'd say that it was a good night. we were able to sit with Raef, look into his eyes, and hear how much the nurses loved to take care of him. they all say he's such a sweet little boy. i'm not sure how any baby could be anything but sweet, but i'll take it as a compliment.

Team Meeting!

2009-02-25T16:12:00.000-08:00

we found out this morning that we get a team meeting on Friday for Raef. that means that our neonatologist, any specialist involved in Raef's care, and Reid and myself get together to discuss Raef's condition, and the plan for his care.

they tried to make him poop again today and were unsuccessful. a gastroenterologist stopped by today when i was out of the room to check on him, so hopefully he'll be at the meeting as well. i'm looking forward to this collaborative effort mostly because i have no idea of what the future holds for our son.

we've gotten in touch with the Prune Belly Syndrome Network to try to connect with parents of children with the syndrome. so far, it seems like a great group of people who truly want to help each other by providing support and information about their experiences.

Mary B. took me over to Peoria today, it was nice to see her after almost two weeks! she's done so much for our family; we don't know where we'd be without her!

on a totally different note, we received our phone bill for February, and were stunned at how much it was! we may be a little less available to people on the phone, so please don't take offense if we're not calling as much as we have been as of late. we simply cannot afford it!

also, our landlord from the apartment we were renting before we bought our house has changed her story, and we're fretting about how to get out of our lease. she was very vague with Reid when he initially called her back in January to see if we could terminate our lease early. she gave him three options that all seemed to contradict each other. of course, this is when we found out that Raef was going to have a difficult start to his life.

needless to say, i sent her a ready, willing, and capable person to sublet our apartment for the rest of our lease agreement and she scared the poor girl away by saying that she wanted to raise the rent and lease the apartment for a year. i just don't understand how to effectively deal with someone who lies so consistently. i'm not equipped to handle this right now, and we can't afford to keep paying rent and our mortgage. i'm so frustrated and infuriated.

needless to say, i've also been here at the hospital all day, and my throat has started to hurt. i need to go home and get some rest so that i can be well for my son.

2009-02-24T13:48:00.000-08:00

there are days in the NICU that lift you up and make you feel like everything is going to be okay, and there are days that throw you into the darkest depths of your own self doubt. i guess there are also days like today. days with no progress and no setbacks.

Wendy brought me over here again today, and thank God. it's nice to have someone with you for a while during the day. even if she's sitting in the waiting room, it's nice to know that someone is here with you.

i was sitting at Raef's bedside with Wendy, just staring at him peacefully sleeping when his doctor came up behind me to chat about his condition. what he said startled me, making me think that he was ready to give up on Raef. i couldn't even formulate a question to ask him for clarification. i was frozen, nodding my head as if i understood everything he was saying. the conversation ended, and he walked away. i found myself crying, wondering what just happened. was he giving up on my son? what is happening here?

Raef's nurses are great today. they could tell that something was wrong, and asked me if i had any questions. they called the doctor back to the bedside so that i could clarify what he had said to me earlier. i misunderstood him initially. he was trying to tell me that they're getting ready to speak to surgeons about the next steps with Raef. our previous conversation was his attempt to tell me that they've tried just about every medication possible to get his GI to work, and now we need to think about assessing it from a surgical standpoint.

i can deal with that. i can't deal with the thought of my son not surviving. i can't deal with the possibility that they may tell us someday that they want to take him off of the ventilator before he's ready. i need to take it one day at a time. i get so scared when i start thinking of even the short term.

i'm waiting for Reid to get here now, i need him to be here with me, and i know that he needs to see Raef just as much as Raef needs him. i'm so happy with my little family. we're doing what we can, we're hanging in there together, and we're not doing it alone. hallelujah.

2009-02-23T13:15:00.000-08:00

last night, i started to feel a cold coming on. i'll be damned if i don't have a cold. i can't believe it. i've been so careful about washing my hands, and staying away from people who were sick so that i wouldn't have to go one day without seeing my son at the hospital. now, i'm afraid to be there because i don't want to take the chance of getting Raef sick, or anyone else for that matter. i don't really know the NICU's policy on parents with colds, but i can only imagine they'd rather you stayed away.

nevertheless, i went this morning with Wendy, as Reid headed back to school today. i scrubbed in as usual, and put on a mask to try to prevent anyone from getting sick. i attended rounds, and soon after felt like i was really coming down with a cold, so Wendy and i headed back to Bloomington so that i could take a nap, drink lots of fluids and just try to rest as much as possible.

i know i probably shouldn't feel this way, but i feel like i've let Reid (and Raef) down today because i couldn't be there with all day. i can't imagine going back to work right now, so i can only guess how difficult Reid's day was, even if it was nice to get back to school.

i'm so angry right now, i could just scream. i hated leaving so early today. my little guy was looking kind of fussy, and i'd never met his nurse before, and didn't know how i felt about her. plus, she made some comment to me about how Raef would be in the same room for a long time (meaning it'll be a while before he gets moved to a step-down nursery). what nerve. maybe it's true, but i don't want to hear it. i have enough on my plate already.

it's almost time for Reid to get home from school. i'm not sure if he'll still want to go over to Peoria, or if he's feeling sick too, or what we're going to do. my brother, Dan is going to be in town tonight with his fiance, Michelle. i really want to see them both as it's been since Christmas already.

i'm hoping i'll feel better tomorrow or the next day so that i can resume being at Raef's bedside.

another good day

2009-02-22T14:37:00.001-08:00

today was another good day. of course, it was also sad because Toni & Gary had to go back to Arizona today. we will miss them dearly, and can't wait for them to come home in April to see a much bigger, hopefully healthier Raef. my mom also left this afternoon. it's so hard to say goodbye to our parents!

we didn't get to hold Raef today, but we did hear that his kidney function is improving! he's showing signs that he can hold his own for now. for now is all that matters at the moment. it's all we can count on as we've learned in the last two weeks in the NICU.

we see babies come and go so frequently in the room that Raef is in, that i've come to realize that i can't compare my baby's progress with that of any other child in the NICU. each kid has a different set of circumstances whether it be their gestational age, whether or not they have other medical problems, or the need for a ventilator. we have a sick baby. that's our circumstance. that's what we need to focus on.

yesterday, after holding Raef for about an hour, i looked over at Reid holding him, and asked the nurse about weaning kids off of the ventilator. she said that it's different for every child, and that some never come off of the vent. that took my completely awesome day to a low that i hadn't expected. it made me realize that i can't be looking that far into the future right now.

my mom and i went to Target after the hospital today, and we walked through the baby section. it's so hard for me to think about registering for baby things, or buying clothes for him. i feel like i should have enough hope to get past that, but i just don't. it breaks my heart, believe me.

on that note, i'm going to try to relax a little tonight. i believe we're having dinner with friends! we haven't really been able to do that in a while, i'm looking forward to it.

our little guy is trying to do push ups. he's getting to be pretty active lately!

he's not very modest, really.

Toni & Gary had to say goodbye for a while today. they'll see him soon!

yesterday, we were lucky enough to have Kris, Jon, my mom, and Reid's parents with us. it was a good day!

not even words

2009-02-21T22:03:00.003-08:00

i can't fathom being able to describe today. in a good way. nevertheless, i'll try.

when we got to the NICU this afternoon, we found one of our favorite nurses to be taking care of Raef for the day. right away, she updated us on his vitals, and we were able to see that she'd put a little sleeper on him. his first time being dressed. how cute! it's funny, when certain nurses are taking care of him, his isolette looks cleaner, and he looks more content. it's nice to see.

we were then notified that we were going to be able to hold Raef today! yeah. us, hold him. it's a crazy idea, i know. i was so happy, i didn't really know what to say. after lunch, we waited for shift change to be done, and went in to find him all ready to be held by mommy and daddy.

nurses getting Raef ready to be held! not an easy task with his ventilator, leads, IV tubes, and such.

Reid and Raef. cute to the zoo. he's so relaxed in our arms. it's very reassuring that we're meant to be his parents. God's greatest gift in our very hands.

my baby. and me. who knew? i only cried a little during this whole ordeal. seriously. tears of joy.

this is actually right after they handed him to me. he's so tiny, but felt so perfect in my arms. he also smells like dirty socks. it's probably because of the moisture from the ventilator. i didn't care, it was a sweet smell because it was my baby!

here they are, putting him back into his isolette. such a task just to get him in and out of it, but i'm so glad they did. these women are amazing. they've given me the best gift i've received in my life so far; an hour with my child in my arms.

that was our day. in a nutshell. oh, my mom came down today as well, and is staying with us tonight. we need to be going to bed soon because we want to get to the hospital early tomorrow. Toni and Gary are leaving for Arizona again, and they need to get out of Peoria fairly early.

i'm thanking God right now for today. i feel a little more like a mom now that i've actually been able to hold Raef. it's been two weeks of longing for just that. these moments are so precious, i can't even imagine what it's like to have a full term baby and be able to hold them whenever you want. what a luxury!

i know that we're not out of the woods with Raef's health by any means, but he's been doing pretty well the last couple of days. we've been told by the social worker to take it one day at a time, to relish the good, and try to cope with the bad. today makes all of that seem a little less arduous.

thank you, everyone for prayers and support. we feel the grace of God. we feel loved and cared for, and know that our son is as well.

tummy time

2009-02-20T21:25:00.000-08:00

Raef had a good day today, and so did we. he's peeing like no other, holding his own. the doctors think that yesterday's difficulty with his urine output was mostly due to his surgery. his little body needed some time to get back into shape after being put through that procedure!

during this morning's rounds, the doctor expressed his concerns once again about Raef's kidneys. he was worried, due to the low urine output the previous day that Raef would need surgery of some sort, and talked about the possibility of having to put him on dialysis. he said that because he's so small, dialysis probably wouldn't work on him. that was hard to hear! nothing was definite at that point in the morning because the nephrologist hadn't even reviewed Raef's kidney ultrasound to make a suggestion as to the course of treatment, if any.

later in the day, we ran into Raef's doctor who told us that the ultrasound showed that his kidneys are working just fine, and the problem seems to be pre-renal (before the kidneys). this means that the problem probably stemmed from his PDA which was just closed. it's amazing how all of these systems work together. i guess there's a reason we're made just the way we are. it makes me appreciate how healthy Reid and i are.

Grandma Toni and Grandpa Gary were able to spend some more time with Raef today, and go to see him experience his first ever tummy time! our little guy looked so comfortable and peaceful on his tummy. it was adorable.

i called the NICU on the way home from Toni & Gary's and our nurse said that Raef is having a good night. he's put out an amazing amount of urine, and is enjoying a little more tummy time. she said that he really seems to like it, his oxygen saturation proves it. when preemies are comfortable, or doing well, their oxygen saturation goes up. the nurses would say that he "sats well."

enjoy a few pictures from today. thanks again to all who are praying for us. we can feel the power of prayer every day. we love you.

tummy time!

being comforted by daddy during his tummy time

that bandage is covering the small incision made during his surgery on Wednesday.

what a trooper!

2009-02-19T15:01:00.000-08:00

this morning's rounds were a little bit of a different experience for us. we were able to sit down in a conference room with Raef's neonatologist and team of doctors and nurses to discuss his condition that day and go over the treatment plan. it was nice to not be sitting next to the isolette, where other people can hear what's being said, and where all i want to do is stare at my baby (and not pay attention to the doctor).

Raef's condition is still fairly stable, he's experienced a couple of setbacks due to the surgery, but the doctor and surgeon prepared us for that before we ever signed the consent form to have the procedure done. overnight, Raef's blood pressure was pretty low. his heart rate had gone up into the 180s, which could signify strain on the heart, or a high pain level for the baby. he also put out some urine during the night, but stopped putting it out in the morning. by the time we'd left today he still hadn't produced urine, and the doctor was going to give him some more diuretics to try to take care of that.

we learned during rounds today that the plan of care is essentially to get him back to his baseline (where he was before his surgery), assess his kidneys, and figure out what can be done about his lower GI. in that order. only then will they start to address the prune belly. the doctor said that the muscle implantation techniques being talked about on the internet are still fairly experimental, and that his big belly shouldn't hinder our being able to take him home if everything else is stable. that made me feel good. i want them to be talking about the day i'll finally get to take my precious son home from the hospital. i don't want his primary residence to be the NICU for a moment longer than it needs to be.

i was having a lot of anxiety at the hospital today. i felt like i couldn't pull myself together. there were a ton of people in the family waiting room and they were being loud, spewing profanity, and taking up a lot of room. everything about the hospital today felt creepy, or dirty, or just not normal to me.

i'm completely exhausted. emotionally, physically, and spiritually. we came home early today and i already feel bad for leaving Raef so early. i just want him to know how much i love him all of the time, but i also know that i'm no good to him if i'm out of sorts and upset. i mostly felt bad because Toni and Gary flew all the way from Phoenix to see him, and they can't go into the NICU without either Reid or myself.

i'm going to get some rest so that i can be my best tomorrow for my little boy, and for Reid.

warning: adorable pictures ahead

2009-02-18T19:21:00.001-08:00

what a day! Raef was scheduled for surgery today which was to take place at noon. i was more than surprised when it actually did happen at noon. my mom (Carol) came down today to be a support person for us during and after the surgery, and thank God she did. we're so lucky that our parents can be there to support us during this time. my parents have been amazing; all of them!

Reid's parents also came home today to spend some time with us and to meet Raef! i'm so happy that he's finally gotten a chance to meet them. grandma Toni and grandpa Gary were so elated to see him, i could just see it in their eyes. their tears were very telling.

like i mentioned in an earlier blog, the surgery's purpose was to repair Raef's patent (open) ductus arteriosus. an open valve near his heart that just wasn't helping his condition. the surgeon made a very small incision below his left shoulder blade and, working around his lung, took a titanium clip and clamped it around the ductus arteriosus. Raef already has titanium forever implanted inside him, just like mommy. we match. lucky for him, his little staple won't set off alarms in airports. below is a picture of the x-ray taken right after his surgery. you can see the clip (and his big belly).

Raef got through the surgery like a champ. what a little fighter. the nurses were impressed with how good his blood gasses were after the surgery (they were a little worried about it beforehand), and the surgeon said that he behaved quite well for him. what a good boy.

all in all, it was a good day. i know that this doesn't mean that we won't have any more bad days, but i'll take the good when it happens. i'll be realistic about there being more scary days ahead. i won't like it, but i'll deal with it somehow. i know that it'll probably be a couple of days before we really see the results of the surgery. the little guy was still groggy when we left the hospital tonight so hopefully he's more alert in the morning.

on another good note, they were able to take his bili-lights off of him today because his bilirubin level was very good compared to the day before.

thank you, everyone who is saying prayers for us. i'm aware that people i don't even personally know are praying for us, and for that, we are blessed. our Heavenly Father is really embracing us, i can feel it. the social worker in the NICU today asked me how i can be so positive during this time, she wondered if i had a strong faith or support system. i have both! God is good. people are good.

we've received so many well wishes, prayers, and other types of support these last few weeks and we just want everyone to know that we love you, we're thinking about you, and we're thankful for you. God bless, and good night, and enjoy the pictures.

grandma Toni and grandpa Gary scrubbing in!

Raef's tiny titanium staple

mommy and daddy giving Raef hand hugs before they started the procedure

beautiful toes!

contemplating pulling on his ventilator tube. he does it all the time.

2009-02-17T14:59:00.000-08:00

we've started reading to Raef. we figure that he'd better get used to having books around.

we were able to see his open eyes all day yesterday!

remember that roller coaster that is the NICU? we took another ride this week.

Sunday night was difficult. Raef had stopped eliminating urine again, and his belly was starting to fill with fluid again as well. we went home that night and practically cried ourselves to sleep. Monday was a little better, as he had started eliminating urine, most of his other vitals seemed good, and they had taken the phototherapy lights off of him because his bilirubin level went down enough to warrant some time without his bili-lights and mask.

this morning, we made it in time for bedside rounds and were able to talk to Raef's doctor. he expressed concern about Raef's PDA (Patent Ductus Arteriosus). all babies have an open ductus arteriosus while in the womb, and it closes shortly after birth diverting blood to the lungs to allow the lungs to pick up oxygen, go back to the heart, and then out to the rest of the body. Raef's hasn't closed yet, and is actually quite large and open. he also has a small hole in one of the chambers of his heart, but the doctors suspect that as Raef grows, and his heart grows, the hole will close on its own.

tomorrow morning, a pediatric cardiac surgeon is going to perform a surgery to close Raef's ductus arteriosus. it's a quite common surgery with little to no complications, and a next to zero mortality rate. it was weird and difficult to sign the consent form today, realizing that it's probably one of many consent forms we'll have to sign for him.

i'm confident in his surgeon. performing this procedure will help his tiny lungs develop more, improve his circulation, and help his heart. it may even help his kidneys and lower GI tract.

Wendy came to visit today, and so did Andrea and Becca. Andrea brought a beautiful prayer quilt from our church family. it's so beautiful that i cried when she opened it up. all the tiny knots tied in it each represent a prayer from a member of our church family. Raef is so loved. we are so loved. Becca provided a beautiful prayer. we are so thankful for our friends.

i've had a rough couple of days, dealing with some NICU mom guilt. i'm starting to comprehend some of the feelings i've been having since i gave birth to Raef. i know now that i feel sort of robbed of the last 3 months of my pregnancy. i feel like a failure for not being able to carry my son to full term to let his little body develop more. i feel bad that i can't provide the majority of the care that Raef needs. i feel like i'm abandoning him when i go home at night. i'm emotionally exhausted.

i pray tonight for our doctor to get rest tonight! i pray that Raef can rest, and that he continues to be the little fighter that we know he is. i pray for all of the people that are praying for the three of us.

2009-02-15T17:54:00.000-08:00

big yawns!

saying hi to his rubber ducky

being held by Daddy, open eyes

being comforted by Daddy

trying to soothe himself by putting his hand in (or near) his mouth

Raef is one lucky little man. yesterday, his Nonnie came to see us, and today his Grandma Verley, Grandpa Gary, and Aunt Angel came to see him. he is so loved by so many people.

i was able to come into the NICU today with a more positive attitude. it helped that i was able to talk to the parent advocate about our experience yesterday with the doctor. she's an amazing resource to have in a place like this. she also recommended that we try to get in touch with other families who've had babies born with prune belly syndrome. i hadn't thought of that yet, and was thankful for the suggestion. i'm not sure i'm totally ready for that but it's something i'll definitely want to do when we have more information about what the cause of the prune belly is.

Reid was also able to talk to our doctor this afternoon while i was visiting with Raef and he had a good conversation about Raef's condition. the doctor has already started researching prune belly, and doesn't think that the cause of it is Posterior Urethral Valve (which was presented as the most likely cause of his bladder problem in Cincinnati). that could be a good thing in terms of treatment, but again, i'm not going to speculate too much until we have more information.

in the meantime, i'm happy to know that Raef is breathing room air (!) and they're going to continue to try to wean him off of his respirator. as long as he can continue to improve his respiratory function and get stronger, we have some time to figure out the root of the problem.

last night, Reid and i said a prayer together before we went to sleep. it helped center me a little, and opened my eyes and heart again to all of the good that is happening around us in spite of the fact that our child is sick. we're surrounded by an amazing group of people. our church family, our awesome friends, and our amazing family. we wouldn't be able to do this without them.

two steps forward, one step back

2009-02-14T19:04:00.000-08:00

we are officially on the roller coaster ride that is the NICU.

after a day of great news yesterday, we received some disheartening information tonight. Raef has officially been diagnosed with Prune Belly Syndrome as far as we can tell. prune belly can mean a whole slew of problems for a baby, and i haven't had much of a chance to research the condition yet so i'm not going to speculate just yet. Raef's doctor is going to call in some specialists in the next few days to assess Raef's situation further.

the doctor, who is a really great doctor, said today that he was very hopeful the last couple of days, but now he just doesn't know. i'm not a fan of that language, but i'm sure that it's honest and he seems genuinely concerned for Raef's condition. he told us that in his 15 years of practicing neonatal medicine he's only seen a couple dozen cases of prune belly syndrome, and that the kids with prune belly usually have a very difficult time.

i want to let this go for tonight. i want to be able to bring the sunshine in with me tomorrow. i pray for some peace tonight so that we can be refreshed in the morning. i pray for god to take his healing hands and put them on our little angel's belly.

2009-02-13T20:42:00.000-08:00

today we ended up leaving the NICU a little earlier than usual so that we could come home and have some time to unwind, and watch some FNL with friends. it was difficult to leave him so early. i feel guilty like i've abandoned him.

guilt is a common feeling among NICU parents. who wouldn't want to be by their baby's bedside 24 hours a day when every day is so precious? the fact that it's common to feel guilty doesn't make it any easier. what does make it easier is that we have a great nurse, and we know that we can call any time of the day or night to check on his status.

right before we left, the nurse took his blood gas, and it was excellent. they used that to determine that they could turn down his ventilator a little, which they did. when we called in around six o'clock, his gasses came back bad, and they put the ventilator back up to where it was earlier today. the nurse said that it can probably go back down if they draw another good gas, but they'll only turn it down 1 step instead of 2 this time. this is just one of those days where you get great news, feel awesome about the progress that's being made, and then have to take a step back when things turn around a little. i know it's not a major setback, but it's hard to hear things like that.

on another note, we used our oven for the first time tonight. some angel (Kara J., compliments of Toni and Gary) put a frozen pizza in our freezer, and we ate it for dinner before we headed over to Dean & Andrea's for some Friday Night Lights. yay for good friends. and red vines. (thanks Andrea!) we also received a most awesome gift from Dave and Becca...Kindergarten Cop. yes. Kindergarten Cop. i can't wait to be able to watch it.

Photos!

2009-02-13T09:52:00.001-08:00

this is our team of doctors and Raef's bedside nurse, Linda. they're pretty great people.

our little man is relaxing more every day. he's trying to get his fingers into his mouth but those tubes get in the way!

sorry this is sideways...21% oxygen is what you and i breathe. Raef is getting there! (he started needing 100% if that's any indication of how far he's come.

just a sweet picture. look at that hair, and his little ear! he likes ear massages.

Aunti Alli and Jacque came to visit last night. we were all very happy to see them!

we've had a great morning here in the NICU. Raef peed last night, and this morning! hallelujah. he's also almost breathing room air, which is huge! he's seven days old today, and we're so proud of him. hope you enjoy the latest photos!

thursday

2009-02-12T22:10:00.000-08:00

i can't believe that tomorrow will be one week since Raef was brought into the world. it feels like it's been so much longer than that already. i have moments where i can't fathom waiting any longer to hold him, to be able to kiss his sweet head, and just cuddle. i don't have any choice but to wait, and it's very hard! Reid and i both long for that day.

today they had us step out of the room while Raef had an x-ray. i hadn't been in the hallway before, and there was this big quilt with each patch representing a different child that didn't make it in the NICU. i wished i hadn't seen that because soon after, our doctor came by and said that Raef wasn't producing urine, and that they were very concerned about that. he's also got a little bit of fluid buildup in his abdomen again. i'd like them to get to the root of that tomorrow. by the time we left tonight around 10:00pm, they were able to get some urine by pulling his catheter out just a tiny bit. i guess those catheters are so tiny, that they can get kinked easily. how scary!

overall, it was a good day. he's requiring so much less oxygen than he was six days ago, he went from 100% to 23%. that's freaking amazing. he is such a fighter. we also found out that his upper GI tract is in working order. now, if he could only poop! they may have to examine his lower GI very soon if he doesn't.

i can't say how absolutely blessed we are enough. so many people have extended their love, support, and prayers that i'm a bit overwhelmed. it's a common feeling for me as of late.

it's late, and we want to make it in time for rounds tomorrow so i'm going to try to sleep.

another day!

2009-02-11T19:59:00.000-08:00

Raef was able to open his eyes for us today!

we've made it another day, and for that we are thankful.

our little boy seems to be doing well today. reid and i were able to really interact with Raef today, it was wonderful. i was able to take his temperature again, and reid and i both fed him some colostrum. he really liked being fed by us, his vitals went up when we were touching him. the nurse says that he must be getting to know our touch. she may just be saying that, but it gave me so much comfort today to hear it.

we both also got to clean him up a bit today. he also responded really well with his vitals when we were gently swabbing him to clean his skin of some of the sticky stuff that hold his tubes in place.

we're about to head into the NICU to say goodnight to our little angel and then it's off to Bloomington so that we can get some good rest and come back tomorrow to repeat.

i have some reading to do. my sister has a good friend who's sister went through the NICU experience. i'm excited and honored that she's given me access to her blog so that i can read up on her experience.

more updates to follow, if you're reading this, and you're frustrated because Reid and i are not great about returning all of the phone calls we've gotten, please don't be offended. we're trying our hardest to keep everyone up to date. we know that many many people are praying for us, and that we are truly cared for. for that, we are blessed.

god's blessings to you and yours. good night!

goodnight sweet child

2009-02-10T21:22:00.000-08:00

we just got done visiting our precious little boy. we're staying tonight at a place called the Family House. i'm not sure i'm cool with it. it just doesn't feel right. we got there to check in, and i couldn't stop crying. i know that it's mostly because i now know that i can't sleep in the same building as our son, and that just kills me. i was not prepared for tonight. i wasn't prepared for how heart wrenching it would be to leave him here, even if we were only two blocks away. part of me wants to go home tonight. to sleep in my own bed. another part of me feels that it would be stupid to go all the way home just because it would make me feel better. what about our son? so many feelings to wade through, and not enough time to prepare.

reid is amazing. i'm so glad to know that i'll never have to feel like i'm going through this alone because it is truly our journey. the situation with Raef's birth defect has brought us closer than ever, and i'm definitely to the point where i don't want reid to leave my sight. i get weepy when he goes to the bathroom which is pathetic, i know.

we're sitting in the family waiting room at the hospital right now. i'm on our computer and reid is using the NICU's computer. i don't want to leave tonight, i don't want to leave the hospital and i feel like such a fool because i can't stop crying. i've already balled my eyes out on the phone tonight to my mom twice. i don't like putting that sort of emotional baggage on other people.

when we were sitting with Raef this evening, our nurse, Jessie, told us that his blood oxygen was doing so well that they were able to keep turning it down on the machine today. what a great sign. i know he's in good hands here. he is also starting to relax a little in his bed. he's started curling his arms up, and clenching his fists. those are good signs. he looks like he's trying to suck his thumb, but there are tubes in the way preventing that from happening.

i want to be able to feel like i can go to the Family House if just for tonight to get rest. i know that i need to take care of myself too, as i'm still recovering from surgery. we have two twin beds in our room. it's kind of smelly, and it is in the basement of a really really old house. i'm not sure i'll feel comfortable staying more than one night, but i think it's just too late tonight to do anything else.

i ask God tonight for some peace so that Reid and i can rest. i ask that he wrap his loving arms around our baby, and provide the kind of care that only He can provide.

discharged!

2009-02-10T13:30:00.001-08:00

i've been given orders to do absolutely nothing for two weeks. easy, right?

we're going to stay here in Peoria at a place called the Family House hopefully through Sunday. i've been told that it's very dorm-like, but i'm not sure i'll care as long as we have a place to rest our heads at night.

Reid is in Bloomington right now, grabbing some of our things so that we can attempt to be comfortable over here for the rest of the week. among those things is the breast pump that i'll need in order to continue to try to feeding our child! i'm a little overwhelmed with the thought of staying here, but also can't imagine leaving Raef just yet.

etc.

2009-02-09T21:09:00.000-08:00

i guess i wasn't done! the amount of information i've received in the last three days, along with the pain medication i've been on has made my mind very fuzzy.

i forgot to mention how happy i was to meet Raef's doctor today. the weekend shifts were so wacky, that we weren't able to get a very consistent status of our little one because of the constant change in doctors' rotations in the unit.

to speak with our son's doctor today provided me some much needed comfort. don't get me wrong, it wasn't all comforting information but he was realistic with us, and optimistic. he says that for a child born with this condition (posterior urethral valve obstruction) at this early in gestation, Raef is doing very well. he's requiring much less ventilator support than they would have expected, and although his kidneys aren't totally out of the water, they're functioning much better than they thought they would.

we were presented with the knowledge today that Raef will need surgeries. some sooner than later, and we're not sure what those surgeries are exactly but at least we know to be prepared for something like a surgery.

right now, Reid is down in the NICU reading Raef a bedtime story. i was able to have, for the first time, some QT with Raef. just my little angel and me. the nurses say that when we touch him, his vital signs improve slightly. that just goes to show how important it is for parents to bond with their children.

i can't wait for the day that they let us hold him against our own skin. i want to see his face, and kiss his sweet head. i want him to hear my voice, and to know me, and to know that i'd give anything for him. i'm so terrified to know that i'm getting discharged tomorrow. i almost have to go home to gather some items, and get a breast pump so that i don't have any problems associated with not being able to pump. i have to pick that up from WIC, so i hope that it's not an arduous task, and they make it easy on us.

i realized today that i have to call our insurance company to let them know that Raef was born. how else are they going to know to cover his medical expenses? how are people supposed to manage all of this information when something like this happens?

we did find out today that there is some financial assistance available to us while Raef is here in Peoria, and then even more so when he comes home to Bloomington. what a relief. i can't tell you how much i've been stressed out about our finances lately. we just bought a house, and it's amazing. i don't regret it, but it serves to remind us of our fiscal responsibilities.

i'm not sure that in my previous blog posting i mentioned the fact that my parents and sister, Allicia were here this weekend. my Mom and Dad and Carol came right down here when they found out what was happening on Friday. thank God. even though it was nice to have some time to myself today, i truly missed my family. i know that i'll probably be seeing a lot of them in the weeks and months to come. that does comfort me.

updates galore

2009-02-09T17:29:00.000-08:00

we've had a pretty eventful weekend. we'll start from the beginning.

Thursday morning, i could barely sit in my chair at work. i ended up going home to rest. it wasn't easy to rest, and i believe i may have even written a blog entry that day complaining about how uncomfortable i was. Thursday afternoon and evening were so incredibly painful for me that i didn't sleep at all, and couldn't get any rest either.

we had a doctor appointment in Peoria on Friday morning that Wendy was going to drive me to. i was in so much pain that Reid decided to come with, just in case something was wrong. good thing he came with, because after we arrived in the ER at St. Francis in Peoria, we found out that i'd been in labor. by the time we got to St. Francis, i was 6 cm dilated. 25 minutes later, i was 9 cm dilated. the doctor decided that it was too risky to try to stop the labor and performed a c-section immediately.

the surgery was probably the easiest part of the whole day. i just wanted our baby to be alright and i wanted to stop feeling the pain that i'd been feeling for the last day.

Raef Garrett Young was born at 10:38am on February 6th, 2009. Raef weighed in at an incredible 2lbs., 3 oz., and was 15 inches long.

because of the severity of Raef's birth defect, he was carefully whisked away before i could really see him. the only thing i could see was a huge purple belly that i could only imagine was my baby boy. luckily, Reid was able to be right by my side throughout the whole process. i'm not sure what i'd do without him.

the doctors drained Raef's bladder, and he was transferred to the neonatal intensive care unit. we're told that this NICU is rated 3rd in the world. what a blessing that it's so close to Bloomington.

family and friends made appearances all weekend, and we were so lucky to have such a great support system during this difficult time.

this morning, without any visitors here, we went down to the NICU together and i was able to take Raef's temperature. it felt so good to be able to provide some sort of care to our little angel. i was able to take it again this evening before we had dinner. i can't wait to hold him. he's such a little miracle.

Raef is impressing his doctor with his lung function, and with the fact that his kidneys are working. he's producing urine, and he's able to take some of my breast milk for nutrition.

if you're reading this, you're loved by us. we can't thank everyone enough for their prayers and support. we'll need more of that because Raef is not nearly out of the woods, and will require surgeries, and extra care.

Herkemer has the hiccups

2009-02-05T18:55:00.000-08:00

what do you say when everyone around you asks if you're having a good pregnancy when you're not? why burden everyone with the story?

i wouldn't be in this predicament if my baby weren't twice the size it's supposed to be. someone actually asked me yesterday if i were having twins. nope. just one baby in here. one baby with one big belly. i'm only six months pregnant, but look like i'm eight or nine months along already. it's not fun. it's not comfortable. i only pray that my baby is still okay and that we'll get to hold him when he's ready to arrive.

we've decided to scrap our list of baby names and start fresh. that is more difficult than it sounds. i'm just so bad with names. i'm just worried that he'll come sooner rather than later and we'll bring home (or leave in the hospital) baby boy Young. it isn't the worst thing in the world that could happen to us and we know that. it's actually quite a minor detail at this point. i'd be happy to have baby boy Young any day.

i hate to whine, but i'm in so much pain these last two weeks. i know that it's not supposed to hurt this much, and i'm taking my medicine just as the doctor instructed. it's not comfortable to lie down, or sit up, or stand, or bend over to pick things up off the floor. and it's not that it's just uncomfortable, it's downright painful.

i get to go to the doctor in Peoria tomorrow morning bright and early. Wendy is driving me over there, and she'll get to see her nephew on the ultrasound screen. thank god Reid has a wonderful family. i love our families so much.

it's time to try to sleep again. sleep seems to be the last thing i want to do lately. i have to get up every hour to pee. it hurts to turn over in bed, to get out of bed, and to get back into bed. i'd rather sleep sitting up but that just wouldn't work either. this is why i need advice, answers, and encouragement from the doctor. i just feel like giving up.

good night!

february...finally.

2009-02-03T14:36:00.000-08:00

thanks to our dearest friends and family, we are moved into our house! it's strange to look around at my new surroundings and understand that it's mine. i can stay here for a while. i can decorate!

seriously though, our friends are the best ever. huge kudos to them for waking up early on a Saturday morning to help us move. i thank God that i know these people.

my parents (both sets) came down on Saturday to relieve our friends of their moving duties and help us get settled a bit. what a great help! it's so nice to be able to see my parents, give them hugs, and share this new chapter in our lives with them. i can't wait for Reid's parents to come home in April to visit us in our home!

when my parents were here, my mom hung a little sleeper on the baby's room door. it's so incredibly sweet, and i hate to say it, but it's so hard for me to look at it. i know that somehow, i'll have a baby boy, but i just don't know when, or for how long, or even how. i don't feel like i'm making sense, but i just don't make sense lately. not to myself.

Friday, i was put on partial bed rest. i can work 4 hours a day in the office, and do some from home as well. i think i'll have to make some important and difficult decisions about work soon. after all, business must go on. i'm okay with that. i have a really great job, and i work for someone who cares, but who needs to continue working probably even harder than before given the increase in responsibilities we've taken on in the last year or two.

well, it's back to coaxing the cat to her litter box and waiting for Reid to come home so that we can get some more work done around here!

on an unrelated note, our house has a cat door that goes down to the basement. that's a great thing! the only problem is that we have a cat who's afraid of her own shadow, and won't use it. i taped it up yesterday and put her litter box out there. i can't tell if she's used it yet, but she hasn't used anything else as a toilet today so we'll just have to see. if i could only speak cat, and convince her that pushing that little flap up with her head isn't going to kill her. for now, i use cat treats to try to bribe her through the door. it's only worked once, and she ran right back inside after she ate her treat.

2 days and counting...

2009-01-29T14:23:00.001-08:00

we close on our house tomorrow afternoon, and get to move in on Saturday. i'm looking forward to getting settled in, and gettin' my rest on. yeah, my rest. i've been allowed to go back to work 4 hours a day unless i begin experiencing a lot of contractions. i'm happy to hear that i can at least be in the office part time. i'm not so happy to have to have that conversation with my boss.

we had our doctor appointment in Peoria today, and the doctor noticed a slight decrease in the amniotic fluid level. not such a good thing for us, but they'll consult with the doctors in Cincinnati to see if it is something to be alarmed about.

we are not in panic mode at the moment. there are too many other things for us to be worrying about right now such as our house, and Reid getting his schoolwork done, and me trying to get my work done from home. something i thought would be possible but bed rest prevents even the smallest things from being possibilities. aside from all of that, added stress could not be good for our baby right now. we have to give it to God, and trust in our doctors and try to get on with things in the meantime.

Amen and Amen

2009-01-28T15:57:00.000-08:00

whew! what a couple of days we've had.

the packing police came over this morning and worked on packing up our apartment in shifts. needless to say, it's done! i slept through a lot of it. Wendy and Jeannie came over around 10:00, and packed the entire kitchen and then some, while i fell asleep.

Dena and Mary B. came over around 2:00 to bring me lunch and finish the job. i ended up calling the doctor while they were packing because the pain was just getting to be intolerable and i couldn't imagine another night like last night. i was in constant pain, and had to pee every three seconds.

Dena took me over to the doctor, they hooked me up to the monitor and saw that there was some irritation so i took a test and voila! i have a bladder infection. that's the culprit behind early labor pains, contractions, and just general discomfort. that's it. i'm so happy. i've never been happier to find out this kind of news. Reid is on his way to pick up my meds so i can start getting better. this also means that my bed rest days are probably almost over.

i think that this ordeal may have been God telling me to pay better attention to my body. it worked.

i don't know that i have words to express how thankful i am that we live in such a wonderful place, surrounded by such wonderful people. i've never been the recipient of such loving kindness in my life from people who aren't even related to me. i know that there is a reason that every single person is in our lives, and i am thankful to be able to see those reasons on days like today (it doesn't hurt that i had a great conversation with my wonderful aunt Teresa about this recently). i just want to give everyone who helped me today a huge hug. and watch out, i'm a hugger. fo' reals.

of beds and rest

2009-01-27T11:14:00.000-08:00

yesterday we had another ultrasound. the fluid levels were good, and i was to see the doctor afterward. i sat waiting for the doctor after the ultrasound, and she poked her head in, said, "great, see you next week." and started to leave. i had to stop her because i had questions of course, and when i told her of the pain i'd been experiencing she immediately wanted to put me on the monitor. come to find out, i was having contractions which needed to be stopped. especially since this baby isn't done yet!

the sent me over to the hospital which is just through a walkway, and i was hooked up to another monitor, an IV, and given a shot to stop the contractions. Reid met me there, and we spent the better part of the afternoon in the hospital. they released me on bed rest until at least thursday when i go to Peoria to see the Maternal Fetal specialist again.

i'm kind of upset. having a little pity party for myself. what happens if i need to be on bed rest for the rest of the pregnancy? how will we earn money? we're supposed to close on our house on Friday and i'd hate to think that we already have to worry about not having enough savings to make the mortgage payment until i can work again. i'm speculating. that's not good.

i get so mad at other people for speculating about the what ifs of this situation that doing it to myself isn't going to get me anywhere. i know that i have to pray that the right way to go about this will be revealed to us.

in the meantime, our apartment is far from being packed, and moving day is Saturday. i know that we have help for moving day, but i worry about Reid having to deal with all of this at once. first we have a problem pregnancy, then we decide to go ahead with buying a house and moving, and he's student teaching in the middle of all of it. i think Reid needs some extra prayers right now as he's just totally stepped up as the person who's going to get all of this stuff done. not that i ever doubted him.

i guess i'll try to "rest" now. wish me luck!

2 down!

2009-01-22T19:46:00.000-08:00

had our second ultrasound since Cincinnati today. it went well. i only pray that they are all this easy!

i think my body is in protest of something because the last two days have been severely uncomfortable for me. i've felt like my belly is about to burst, and it hurt to sit, stand, walk, laugh, cry, etc. it's finally starting to feel better. phew!

oh yeah, i'm kinda getting huge too.

thank God for low rise jeans and rubber bands. my style hasn't been cramped too much. yet.

where's my husband?

2009-01-21T14:31:00.000-08:00

seriously. i hate coming home to an empty apartment!

today, i feel like i'm going to pop. i don't think my body was ready for such a big baby so soon. i'll live, just uncomfortably for now.

i've had two really productive days at work this week, and we have a listing appointment tomorrow morning that i'm excited about. it's nice to have things like that to look forward to! we're also less than two weeks from closing on the house and really need to get packing.

hopefully we'll get to enjoy drinks (non-alcoholic for me, thanks) with friends tonight, and a good ultrasound in the morning to keep us going into the weekend.

good news

2009-01-19T17:57:00.000-08:00

we had the first of many ultrasounds to come today. it went well. we could see our baby's face, and its adorable little arm and hand. we saw the baby move its little mouth, and eyes. love it.

i was happy to be able to call my mom with some good news. i hate to think that she's worrying about us so much. i know that it's because she cares, but seriously, life is stressful enough! luckily she's on her way to Florida to see my sister Tina. i know she's going to love spending some well deserved time in Ft. Myers (Tina's kids are cute to the zoo...and smart).

the doctor measured my belly today, and i measure at 27 weeks although i'm only 24. it just breaks my heart that the extra baby in there is bladder, and not just a big baby. at this point, it's about volume, not weight so i don't think the bladder is causing it to weigh more than it really should, maybe just a little.

Reid sent out another update email to our concerned friends and family. i'm so glad he's such a great writer. he should be the one to keep a blog, but has too much stuff going on in his life to make time for blogging. i have to give him credit, this is going to be a tough semester with student teaching, buying a house, having a problem pregnancy, and all of the other small stresses that life seems to present. he's pretty awesome and i'm so lucky to have him by my side through life.

it's only 8:00pm and i'm truly exhausted. time for some fizzy water and a good bedtime story to put me to sleep.

ultrasound? i think not.

2009-01-16T13:33:00.000-08:00

my ultrasound appointment for this afternoon was canceled without my knowledge. i left work early to find that their only ultrasound technician is sick today. really? one person in the office is trained on how to use an ultrasound machine?

i admit that i'm having one of those days where i want to scream, because these things are so out of my control i feel totally helpless and sad. maybe i'm being over dramatic but i can't find any other words to describe the way i feel at the moment.

i look forward to our Merge Christmas leftovers party tonight. it'll be nice to see our church friends and have some fun.

we did have some good news from the termite inspector today, and i'm expecting our radon report anytime now. i pray that it's low so we don't have to ask the seller to mitigate the situation.

a whole new bag

2009-01-15T18:03:00.001-08:00

i almost feel like i've had a chance to decompress from this week. it's been such a whirlwind that i'm surprised that tomorrow is Friday. not that i'm the kind of person who usually has a work-week countdown. i don't play that way. i like my job about 98% of the time.

speaking of jobs, i actually had sort of a rough day today. i've been so worried and distraught and distracted for the last few weeks that i finally got caught on a slip-up. i felt so horrible. i'm pretty good at beating myself up for mistakes i make at work. i think it's because it's not MY business, and i hate the idea that i've made things difficult or even just inconvenient for someone else. i hope that i can devote my full attention during the work day to what i'm doing. there's a lot of work to do, and for that i should be thankful. not many people in our industry can say that.

reid has been going over some of the information we were presented with at the end of our visit on Tuesday. thankfully he had the day off of school because of the sub-zero weather, and devoted some of that time to learning more about our baby's condition. he also took me out to lunch and we signed our contracts for the house we're buying at the end of the month.

i never thought i'd appreciate my husband so much but it has been so amazing to be married to reid. i guess i did think of marriage as a sort of "institution" before i was married, but having a relationship with reid combined with our heavenly Father, i feel like i'm wrapped in a big warm fuzzy blanket and never want to leave it. marriage is awesome.

i have an ultrasound tomorrow, one of the 30 something i'll have during the rest of the pregnancy. i pray that they see that the amniotic fluid is good. i pray that i don't get that blank look from the technician. i pray that reid can be there with me. i know that we'll get through this. i'm done speculating and ready to live my life, trust in God, love my family and friends for being awesome, and plan to let God bring this beautiful baby into the world. amen!

homecomings aren't always sweet

2009-01-14T15:44:00.000-08:00

we got home today around three or three thirty. i stopped keeping track of the time.

the last 48 hours have been some of the most intense hours of my life. i've had some low lows, and some high highs. i'll give you the long and the short of it...

we went through a day of testing consisting of an MRI, a meeting with a social worker, a pastor, a nurse/midwife, an intense ultrasound, a meeting with a genetic counselor, and a "team meeting."

all of these meetings were planned so well that i'm absolutely amazed at the efficiency of this place. everyone was gentle, kind, comforting, and honest. i didn't feel like i was having the wool pulled over my eyes during the process. it was nice.

the results of my MRI and ultrasound provided the doctors with enough information to come to a conclusion about treatment. the ultimate decision was to not intervene at this point. here's why:

unlike many of these cases, our baby actually has a good amount of amniotic fluid surrounding it. usually, the fluid is gone or near gone, and the baby either needs intervention, or they tell you that the baby doesn't really have a chance. this precious fluid is keeping our baby alive, and its bladder is obviously emptying a little, just not nearly as much as it should.

our pregnancy is now considered to be high risk. i'll have to have ultrasounds twice weekly to make sure that the level of amniotic fluid remains the same. if it begins to deplete, i'll go back to Cincinnati for some sort of intervention.

while it was shocking to hear that nothing was going to be done to relive this enormous bladder issue, we heard the doctors logic behind their decision and conceded that we were okay with their recommendation. sticking a needle into my belly at this point could compromise the precious amount of amniotic fluid that is there. the risks to the baby and myself are outweighed by the benefits of not intervening at this time.

we will continue to pray for good ultrasounds. we'll continue to pray for a baby that we can hold in our arms in April or May.

i'll have to deliver at OSF in Peoria where they have a neonatal intensive care unit and specialists that can assist the baby when it is born. it'll need extra care in the beginning of its life, but i have faith that it'll survive.

the prayers the three of us have received have truly lifted us up in this time of uncertainty and fear. i know that my life, and that of my child are in God's hands, as they always were.

it's nice to be home with Reid. we'll have some time tonight to decompress a bit. if it seems like i'm withholding information, it's because i haven't had the time to fully process the events of the last few days. more details will follow.

i feel the need to mention the incredible support we had on our trip. my mom along with Reid's mom and our friend Jon were with us every moment of this ordeal the last couple of days. our moms did the worrying, comforting, and crying, and Jon provided wonderful support, insight, and the occasional giggle or twenty.

oh, Cincinnati

2009-01-12T14:20:00.000-08:00

Reid and I are headed to Cincinnati with his mother Toni in tow. i was able to sweet talk the center into getting us in tomorrow instead of Friday!

please stay tuned as we'll post updates. you all are in our prayers because we love you, and are blessed to know you.

bad distractions...who knew!

2009-01-11T14:54:00.000-08:00

we had our home inspection yesterday, and it turned up some things that worry me a lot. i'm talking deal breakers. which i'm fine with. i think the health and sanity of my family is worth more than a cute little house. period.

as a real estate agent, i'm disappointed in the amount of misrepresentation going on with this piece of property. i'm almost to the point where i'm done with it. if people want to be untruthful, and misrepresent things that can clearly be seen by others, they have a problem and i'm not about to make it my problem. if i had more energy right now, i'd probably be willing to fight much harder.

my mom and Gary were here today for brunch and to see the house. i'm so happy that she was able to be here. it's amazing what a hug from your parents will do for you. if i could get a hug from my dad and Carol, we'd be doing pretty well.

i'm going to work tomorrow to straighten things out in the office so that i can be prepared to leave for some time when that time comes. i actually really love my job, and the people i work with and for. it'll be nice to be in their company for a while tomorrow. now, other REALTORS in the office, maybe not so much but i'll just have to keep a low profile and not let myself get overly emotional. i'm not very good at that, so we'll just have to see what tomorrow brings.

information

2009-01-10T17:12:00.000-08:00

i'm posting a link to the Fetal Care Center of Cincinnati's website. it may help describe what's going on, and it's helped me cope a little by giving me enough information to both scare me, and give me some hope.

http://www.fetalcarecenter.org/fetal-surgery/bladder-obstruction/default.htm

my love to everyone.

distractions!

2009-01-10T09:02:00.000-08:00

today we have our house inspection on the home we've decided to purchase. i'm excited for the distraction, and hope that not much is found in the inspection. i don't know how much energy i have to fight silly issues that should be fixed even though the seller may think they're trivial or not worth it. we'll see! i've done this with clients, but when it's my house, i'm suddenly my nightmare client. weird how that works.

last night was nice. we had dinner at our favorite Mexican restaurant, El Porton, and went to Dean & Andrea's to watch Wall E. it was cute to the zoo. i'm pretty sure that Reid now wishes we were robots in love in space now.

this morning i listened to a message from our good friend Amy. it made me cry, and not because she was crying in the message, but because i realized how much our friends really mean to us, and how much love i have for them. so, thank you, Amy. i love you too.

as for the general outpouring of support and love we've received, i am eternally grateful. i will keep this close to my heart forever, no matter what happens. i know that i am truly blessed.

reid continued to research a little more last night and some of the things he found gave him more hope, and some of them took it away. we just know that we have to have faith that God will show us what is supposed to happen. the miracle of medical science will help tremendously, and the well wishes from our family and friends will help keep our spirits up through whatever is coming.

i have to admit, i haven't been able to pick up any of the baby books i've been reading lately. it's my own self doubt shining through. i think i'm afraid to keep learning about something that i may not have, yet i want to believe that everything will be okay so i haven't given up, i'm just putting it on hold. Dr. Sears can wait.

my mom is coming down tomorrow for the day. i'm so glad. it'll be nice to be able to actually give her a big hug. i think we'll go see the new house too. can't wait!

waiting

2009-01-09T10:25:00.000-08:00

Advent came and went, and along with it went my patience. i'm going kind of crazy sitting here in our apartment trying to figure out how to wait patiently enough for doctors and nurses to get things into place so that we can take care of our child. thank God Reid is here with me. i also thank Him that i have such a caring family, and such wonderful friends.

i hope that anyone who's said a prayer for us knows how much we truly appreciate it. we're returning them too, being thankful for all that we have.

it looks like we're going to Cincinnati. we don't know when, exactly, but hopefully sooner rather than later. i'd hate to have to wait all weekend to find out what's going on, and what can be done.

i feel like a broken record. i feel like crying. i wish i could hug my mom. i wish i felt like doing something other than sitting here feeling sorry for us.

in our 20s/30s ministry team at 2PC, we often used an analogy of a bridge to try to understand where people in our age group might fall in the ministry. i'm feeling the whole bridge thing right now. maybe we're stepping onto the bridge right now, and in my mind it's one of those bridges that's not flat, it's like a small hill, and we're going to have to begin walking uphill very soon. it might be a while until we're at the top and can see the other end of the bridge. we might stub a toe somewhere along the way, and that might slow us down for a while but i have faith that we're meant to get to the other side.

so the waiting continues. i wait for my spinal surgeon (from a surgery about 5 and a half years ago) to call me back so that i can have those surgical records faxed to Cincinnati. it sounds like they don't want to proceed with scheduling until they know what they'll be able to do. then i wait to hear when i'm scheduled to see the doctor so that we can get the hell out of here.

2009-01-08T20:18:00.000-08:00

Reid and i had a very difficult day. we found out that there is a pretty serious complication with our baby. in short, it can't empty its bladder which has created a bladder the size of, well, it's practically bigger than the baby itself. we don't have all of the details yet, and will see a specialist hopefully in the next day in Cincinnati.

we've had the chance to talk to our families this evening, and for that we are so grateful. family can help put things into perspective.

we also had a chance to have some very close friends over tonight to help us talk about how we're coping, and to pray with us. i've never heard a more beautiful prayer, and i will keep it near to my heart these coming days, weeks, and months.

it's amazing how attached you can grow to a child that isn't really here yet. it's got at least four more months to go, but i wish i could hold it in my arms right now and see that it's okay. i want so badly for it to be okay. i know that reid feels the same, he is so amazing, and will be such an amazing father.

i'm hoping that all of the tears that we shared today will truly make us tired enough to be able to fall asleep tonight so that we can be alert when we get the call tomorrow as to what the next step is.

growing up and buying houses

2009-01-07T07:53:00.000-08:00

we did it! we've got an accepted offer on a little house on Market Street. i finally feel like our family will have room to grow as it actually grows. interesting concept, more interesting that i resisted the idea for so long convincing myself that we could all fit in this tiny apartment! i'm tired of having Reid's bike in the living room. i'm done with that.

the transition from still feeling kind of like i'm still in college to adulthood is happening very fast. it's a welcome change.

we have our sonogram appointment in Peoria tomorrow with a specialist. i can't wait to see our baby again, and i pray that everything is alright, or at least fixable. i'm sure everything will be fine in the end, but the anticipation of this appointment combined with the anticipation and anxiety of trying to buy a house in a weekend have come together to form a pretty crazy stress that i can only describe as a tingly feeling in my tummy. it's different from the kicking and punching going on in my tummy so it's fairly easy to differentiate the two.

why am i blogging at 10:00 on a Wednesday? we were locked out of our office this morning at work and i'm at home waiting to be able to get in and get some work done. don't get me wrong, i wasn't about to bust the door down to get in there, but a full day of work after all of this holiday madness would be nice.

i look forward to dinner with the in-laws, and drinks (non-alcoholic for me) with friends tonight.

week 22

2009-01-03T12:15:00.000-08:00

reid and i are expecting our first child in May. scary, i know. our camera was washed and dried, and no longer works so the photo taking has temporarily come to a halt and i'm going to try to describe my (our, maybe) experience using words. gasp! it's one of many ways i can put that english major to work for me. take that, everyone who said english majors were worthless.

i think i've gained about ten pounds now, and it shows. mostly in my belly. which is awesome. it's not awesome when i want to bend over to put socks on, or bend over to pick something up off of the floor, or reach for something in the car, or dig for stuff in the lower cabinets of our kitchen. okay, it's really only good for looking at and touching.

we had our first appointment with WIC this past week. although i don't consider myself to be living at poverty level, my income says that i am and therefore i can receive the services that the county provides to expectant and nursing mothers that i would otherwise have to pay for in some other medium. i consider myself lucky to be able to receive WIC, and don't care that i'm practically on food stamps because of it. i am disappointed that the milk i'm allowed to buy using the food stamps has to be the "least expensive brand." i might just have to keep buying organic milk to try to prevent my daughter or son from developing too early.

just today i began to get overly anxious about being pregnant and expecting our first child. we live in a tiny apartment and seem to have a lot of stuff. we went looking at houses the last couple of days and i'm pretty sure i've found the one house in bloomington i'd like to buy. now, qualifying for a mortgage is a different story. i pray that i can afford to give my family a little more space than we currently have.

i'm finding out (although i've always known this) that husbands are awesome. especially my husband. i'm so happy that we're both on the same page, and wonder how some people do it if they can't agree on certain fundamental things in their relationships. i feel that God has truly blessed me with a great family both immediate and extended. i'm lucky enough to have three sets of parents and they are all amazing.

i hope that you can enjoy watching reid and i go through the roller coaster that is pregnancy, and parenting.

i need to go so that i can expose my unborn child to some more sappy indie/folk music and clean the apartment. Bon Iver, here we come!