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

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

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

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

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

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

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

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

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

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

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

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

back to it

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

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

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

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

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

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

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

Signe is also pretty rad.

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

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

Lily and Kris being awesome

Leah and Judah came to visit!

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

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

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

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

there was a lot of this going on.

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

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

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

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

distractions!

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

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

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

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

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

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

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

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.

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.

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...

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!

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.

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.

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

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

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

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!

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

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.

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.

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

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.

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!

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!