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!

thursday

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!

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

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!

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.

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

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

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!