Stevie's Pub

We started decorating Stephen's room at the NICU last week and we've slowly but surely been adding to the walls. I originally wanted to decorate with cute cut out letters and handmade decorations, but then realized that a) I am not crafty what-so-ever and b) it doesn't matter if things match or look cohesive. But then we started collecting sports paraphernalia from Grandma and Mimi and then I realized I had a bunch of other stuff at home too. And we've gotten some things from relatives and friends that I wanted to put up as well. We've got quite an eclectic bunch of things in his room; but mostly it's all sports related. So we started joking that his room is now a sports bar...better known as Stevie's Pub.

We actually had to move rooms on Sunday morning, so these pictures are actually from before his move. And today when I arrived, Dr. Baker had added his own touch to the decor by adding an LSU flag to the wall. We figure, the more the merrier (even though Stephen's mother will discourage him from attending any school other than Penn State) and the doctors and nurses are more than welcome to add their own touch to the walls! We love it!!


















I'll have to take some more pics tonight of his valentine's day hearts and his new digs. On a different note, we've had some great cuddle time over the past couple of days and Stephen hit an all-time low weight (aside from his birth weight) of 4470 grams, which is right around 9 pounds 13 ounces. He looks great and is doing fantastic! They are weening his pain meds and antibiotics and he's holding steady for the time being. Which is fantastic!!

Prayers Needed

Everyone has been so generous with their support and prayers for Stephen, Bill, and I over the past couple of months, and we have truly appreciated every single prayer, well wish, positive thought, email, note, and phone call. We know that those prayers and support have gotten us through the really bad times and have helped to get Stephen to where he is today.

But today I am asking you all for another huge favor; to please add two more families and babies to your prayer lists. Through this whole process, I have been able to connect with other Moms who have children with ARPKD of varying degrees and ages. It has been so incredibly helpful to hear their stories and know that other babies have survived birth, went on to receive transplants, and grow into healthy children. Especially when some doctors said it wasn't possible!!!!

In the past couple of weeks I have been connected with two other Moms who were also diagnosed in utero and who have also lost their amniotic fluid. One Mom lives in the UK and one lives in Washington (gotta' love the Internet!!) and both are having little girls. I know Stephen's journey has made them hopeful that their little girls will follow the same path and survive past birth, but I worry for them just the same for I know exactly what they're going through.

You can read more about Naomi's story here: http://ellieandmi.blogspot.com/

And Andrea's story here: http://dorningsfaith.blogspot.com

Please pray for them that they have the strength and courage to fight this disease and that their little girls will follow in Stephen's path and come into this world fighting to survive.

Thanks!!!!!!!!!

Another Crazy Day

Today was another "typical" day in the NICU in that there were plenty iof ups and downs to go around. We actually just got back from the hospital for the night (it's just before midnight) and I am setting up to pump before heading tonbed. But wanted to post an update since a lot has happened in the past 24/48/72 hours. I'll break it down by system/issue to make it a bit easier.

1. Ventilator/lungs/breathing: so this morning when we called the NICU to check on the little man (as we do every morning), we found out from Connie that his blood gases overnight and into the morning had been really good and the soca were talking about extubating him today. It was a shock to us because just two days prior, his blood pressure was really high despite the fact his PPHN had resolved itself and the nitric oxide treatment had been stopped. We were a little worried that maybe he was being extubated too soon, but trusted that sods knew what they were doing. We got to the hospital around 1 pm and chatted with the neonatologist about it. He would have another blood gas at 3 pm and if everything was still looking good, they would take out his breathing tube. The blood gas did not come back as expected, so he would stay on the ventilator. But then his 5pm and 8 pm blood gases came back great, and they ended up extubating him tonight. So right now Stephen is back on CPAP and breathing completely on his own and he's doing great! His respiratory rate (the number of breaths he's taking each minute) this evening was great and he was nice and relaxed when we left.

2. Dialysis: two days ago his weight was up 200 grams and he was getting really puffy again. He was still getting really good outputs with his dialysis, meaning each time the fluid was drained, more fluid was coming out than going in. That's exactly what we want. But it has been a mystery as to why he had put on so much weight. So the nephrologists had to make some adjustments with his dialysis solution, and it appears to be working because Stephen lost a good amount of weight during the day today and was down to around 4700 grams tonight, which is just over 10 pounds.

3. Infections: We also found out yesterday that Stephen has an infection in his trachea from the ventilator tube. It's a type of yeast infection that grows in warm, moist places such as the throat and is some what common in people who are ventilated. Luckily we found out today that the infection has not entered the blood stream, his lungs, or the peritoneal cavity. If the infection reached one of those three places, it would be very bad for Stephen. Then today, we found out that he has another type bacterial infection they are also treating with an antibiotic. Stephen has been spitting up his milk and mucous the past couple days so they cultured a lot of different things, including my breast milk, to try to determine the cause. The preliminary results came back tonight and it turns out that my breast milk had some positive hits. Most milk does and would never affect a healthy baby, but with Stephens compromised immune system, it does. So we'll wait until the final results come back tomorrow, and then they may need to run some more tests on my milk. Just one more thing for me to worry about!!

But we are saying our prayers tonight that Stephen continues to do well on his CPAP and things keep heading in the right direction. It would be a terrible thing if he has to be intubated again, so we just hope his blood pressure remains low, his breathing stays low, and he stays nice and relaxed. And hopefully if all goes well overnight and in the morning, I'll be able to hold him again tomorrow!!! :)

Tough Question

I've gotten a lot of questions lately about how I am feeling and doing since I guess I really haven't said much about myself. It can actually be a pretty loaded question, because depending on the day and the person asking, you might get a short answer or you might get a long one. Mostly I just say, "physically I am doing great." And leave it at that. Mentally and emotionally, it varies depending on the day, the hour, and the minute you catch me.

Physically it doesn't even really seem like I just had a baby. For that, I attribute everything to Dr. Al-Khouatly. I know I don't have anything to compare it to, but I feel like I recovered really quickly from my c-section. I never had any trouble with the stairs (we have about 30 steps leading to our front door) and was able to drive 10 days after surgery. The hardest thing was just getting out of bed for the first week post-op. I did have some trouble in the hospital when my catheter was removed, but I think it's probably typical to have problems getting things moving after abdominal surgery!

But mentally and emotionally things are all out of whack. I know I just had a baby and I visit him every day, but its hard to comprehend it when I don't have a baby to take care of, to feed, to hold, and do all those things with that normal Moms get to do. Someone else is taking care of him 24/7 while I stand by and watch. I think to myself, I bet most Moms don't even remember the first time they saw their baby's eyes or the first time they got to wash his/her clothes, or his/her hair. For us, those everyday things that new moms and dads do with a new baby are a luxury. I can count on one hand the number of times I've been able to hold my baby in the 22 days that he's been alive.

And when I run errands before going to the hospital, I think about the fact that I'm not pushing a stroller. That other people have no idea I just had a baby. Or that our neighbors that we don't know very well just saw me insanely pregnant a few weeks ago, and now I am clearly no longer pregnant, but don't ever have a baby with me. It's just very weird and hard to deal with some times.

And not knowing when he will be home and how big he will be and who will take care of him, makes it even harder. I can't make any decisions or plans for the future, because we have absolutely no idea

Birth Story, Part 2

I am having some technical difficulties at the moment. My post was available on the blog just a few minutes ago, but has disappeared somewhere into cyber space. But you can get to this post and the pictures by pasting the following link into your web address bar:


http://stephens-journey.blogspot.com/2011/01/birth-story-part-2.html

Sorry about the difficulties!!

A Super Special Day

Christmas came early today for Stephen's Grandparents as we were allowed a very special visit with all four grandparents today in the NICU. A visit we didn't think would happen until either Stephen came home or until flu season was over. The NICU has a strict visitation policy during flu season that only parents are allowed in the NICU. It's a tough policy for people like us whose babies will be in the NICU for an extended period of time. Up until today, the only glimpse of Stephen the grandparents had gotten was the morning of his surgery when he was wheeled down to the OR (aka the bowels of the hospital) in his transporter. And even then, they really couldn't see him because he was so covered up and attached to so many machines and tubes. And it was so fast.

We never imagined 19 days ago that we would have Stephen here on Earth with us and after his setback on Wednesday night, we figured it wouldn't hurt to ask just once if we could have a visit with the grandparents. So on Friday, we did just that and the amazing NICU staff and our nurses made the visit happen today despite the strict visitation policy. Of course it was a huge help that Stephen is in own private room, and we were able to sort of sneak the grandparents, two at a time, into Stephens room through a "back" door. Not only was the visit great because they were able to see and touch their grandson, but it was also great because they now understand and have seen first hand what it's like for Bill and I on a daily basis. They can now relate a little bit and understand better about what's happening at the hospital when we talk about our day.

We owe everyone at the NICU a huge huge THANK YOU for making today happen. You made four grandparents' wishes come true today!!!









































































Grandma Tish got Stephen his Giants jersey and Mimi (Grandma Noll) got Stephen his Terribel Towel. Some of Stephen's nurses are Steelers fans, so he's now an honorary Steelers fan! And this week we are going to work on decorating the rest of his room. Momma needs to learn to get crafty!!!

The Dreaded Phone Call

So yesterday right after I posted, everything instantly changed. While I was writing the post, Stephen was getting his ECHO. The ECHO showed that his pulmonary hypertension (PPHN not PHT as I wrote yesterday) was actually really bad. Much worse than they thought. So they immediately put him on the nitric oxide and nasal cannula. The course of action was to wait about 48 hours to see how things were working. If his breathing and blood gases were good, he would stay on the nasal cannula, but if not, he would need to be intubated. It was around 4:30 pm when they switched him to the nasal cannula. We left the hospital at 6:00 pm and things were looking fair. Not super great, but not bad either.

Around 8:15 pm, we got the dreaded call from the NICU that we should come back to the hospital. That they needed to intubate him and put him on the ventilator. Luckily, our awesome nurses, Jess and Jenny, stayed past their shift and were there with Stephen. We met with the neonatologist when we got there and he explained everything to us that Stephen's breathing wasn't getting any better and he just wasn't able to get any of the nitric via the nasal cannula.

Basically what was happening was that the right side of Stephens heart, which pumps blood to the lungs where it picks up the oxygen, was working on over drive because the blood vessels that go from the heart to the lungs were constricted. And because the right side of the heart was working so hard, it was also becoming enlarged. So he was having to breath really fast shallow breaths to get any oxygen in his lungs. Unfortunately, if not caught soon enough and treated, PPHN can be fatal. But luckily, Stephen's nurses recognized the signs and insisted he receive that ECHO yesterday.

PPHN was actually a concern of the surgeon's prior to his surgery last week, but he only had a very mild case of it last week. Then it went away, and now it's back. But after today's follow-up ECHO, things are looking good and his stats and everything are fantastic. Plus you can tell that Stephen is really comfortable today and feeling better now that he isn't working so hard to breath. And surprisingly, the enlarged portion of his heart has already shrunken back to normal (we were able to get an update from the cardiologist today). Now we just hope that he takes well to being weened off the nitric oxide and the PPHN stays away for good!!!

Here's a picture of Stephen from yesterday with the nasal cannula and then today with the ventilator.

Day 15

I'm at the NICU and Stephen is right now getting another echocardiogram (ECHO). For the past couple of days, they have been carefully watching his blood pressure and the number of breaths he takes a minute, among many other things. Unfortunately, the number of breaths he's been taking has been steadily increasing over the past two days. Which means he's breathing really fast and pretty shallow. He isn't taking the big deep breaths that they would like to see. All of this is attributed to pulmonary hypertension (PHT). It's something the surgeon was very concerned about going into his big surgery last week, but wasn't too much of an issue until now. Hopefully by getting the ECHO today instead of tomorrow (thanks Jess for insisting...Stephens nurses are the best!) they will be able to figure out what's happening and intervene before it gets too bad and he has to go back on the ventilator.

From what i understand, there are two interventions they could do to try to help alleviate the PHT; supplying him with Nitric oxide in his oxygen or with Viagra. Yes, you heard right....Viagra! Apparently Viagra was originally developed as a heart medicine. It's now used for the discovered side effects.

We also had a little "scare" today with dialysis as well. Yesterday and overnight his dialysis out put became a really dark organism-red color. Prior to that, it basically looked like pee. Because of the sudden change in color, they were concerned that Stephen might have developed an infection in his abdomen. So they've taken some various samples and tests and are waiting for all the results to come back. But based on the way his red and white blood cells look, it doesn't appear that he has an infection. Thank goodness! And his output this last time is back to looking normal. So fingers crossed all the cultures come back clean.

But this is daily life in the NICU. Up and down and up and down.

Birth Story, Part 1

Don't get scared off by the title of this post. I'm not going to share all the personal details of Stephen's birth, but I am however going to document that day so that in 10 or 15 years from now, I can remember the important details of such a special day. I actually found myself saying to Billy today that I wish I could go back and relive every minute of January 4th. It was such a scary day for us, but also such an awesome day and it amazes me every day since then, how every single piece of the puzzle fell exactly in place that day to get us where we are today. God and our guardians angels were truly looking out for all three of us that day.

I went to work on Monday, January 3rd like every other day and worked a full 9 hour day, but knew that I had a doctor's appointment Tuesday morning at 8:30 am at the hospital in the antenatal testing center. I wasn't sure exactly what our appointment was going to entail, but I ended up taking some of my work home with me, my blackberry charger, and some important paperwork, because I thought there could be a slight chance that based on what happened at my appointment, I could maybe be put on bed rest or maybe they would decide to set an induction date or a c-section date and I wouldn't get a chance to go back to the office. And Billy and I had decided Monday night that at our appointment on Tuesday, we were going to insist that the doctors set a date for me to be induced. I seriously couldn't take waiting any longer to find out what was going to happen to Stephen. Mentally, I had had it. And we both agreed that Bill would make my wishes known to the doctors the next day.

Well, at around 4 am Tuesday morning, I woke up trying to roll over/change positions in bed. When I woke up, I felt a strong cramping sensation and sat up on the edge of the bed for awhile until it passed. About 10 minutes later, I got another one. Bill was also awake at this point, but neither of us thought there was any chance that they were real contractions. I sat in bed for awhile watching the clock and writing down the times each one came for about 45 minutes until we decided I would call the doctors office. Unfortunately, the doctor on call that morning didn't have any real definitive advice. He said I could either go to the hospital or wait until 8:30 and go to my appointment. Not really what I wanted to hear. So we decided that we would grab our showers, finished packing a few things, and then head to hospital. If it was false contractions, Bill would bring me back home and then we would go to work or whatever. In the middle of all of this, my darling husband also decided to become domestic and ran the dishwasher and threw a load of laundry in the washing machine!

It was about 6 am when we left the house with the dog and headed for the hospital. On our way we stopped at 7-11 too to try to buy a lottery ticket, but the machine was broken. I thought, this can't be a good omen for the day.

Bill made it to the hospital in record time, only running one red light! And we managed to drop the dog off at Bill's parents house on the way. Once we checked in and made it to triage, it finally hit me that we were at the hospital to have our baby and it was the first of a few times I would lose it that day. There they confirmed that I was in fact having contractions and we found out that not only was Kelly Gallo (the nurse coordinator and our champion) working a 12 hour shift that day, but the doctor on call was Dr. Al-Khoutly (I knew that Dr. Khoury was out of the country). We had met Dr. AK once before in the office and both Bill and I really liked her. I instantly felt better and could relax knowing that our awesome team was in place and we (Stephen and I) would be well cared for.

At around 8 am, Dr. AK came to check to see if I was dilated at all. What no one tells you is how incredibly insanely painful that is!!! 100 times worse than contractions. At that point I was only 1 cm dilated. But Dr. AK decided that it would be best to admit me rather than send me home and wait for me to dilate under the circumstances. So Kelly hooked us up with an awesome labor & delivery nurse, Mary Ruth, and we were carted with all our gazillion bags to labor & delivery where I would get my epidural (pretty quickly) and spend the next 9 hours.

Pretty soon after receiving my epidural, the troops arrived; my parents and sister and brother-in-law from PA (we called them on the way to the hospital and they all flew down to VA) and Bill's parents. They came and went throughout the day as Dr. AK would come to check my progress. By early afternoon, the pitocin started working and I was up to 3 cm. The anesthesiologist did an awesome job with the epidural, because I was fairly numb, but could still feel each contraction a fair amount. Which is exactly how I wanted it.

At some point in the afternoon, they upped my pitocin a few more times to get me to dilate (hopefully to 10 cm) and the contractions got really really strong again. I fought through it for awhile but then caved and asked for some more "juice" in my epidural. When Dr. AK came to check me again sometime between 4:30 and 5 pm, I was miraculously dilated to 10 cm! My L&D nurses, Mary Ruth and Nancy did an amazing job! But now I was faced with the reality that Stephen was really coming, and I was going to have to start pushing....and I had absolutely no ides what to do. I wasn't prepared at all. I hadn't take one class or read one book about labor after finding out about Stephen. And so I lost it again. Oh and I forgot to mention that I really lost it earlier in the day when the neonatologist came to chat with us about our wishes for Stephen's care and providing him with comfort care if they couldn't get him to breath.

But Mary Ruth was so awesome and coached me and Bill through the whole thing. I don't know what I would have done that day if it wasn't for Mary Ruth, Nancy, and Dr. AK. But I'll share more about what happened next in Part 2. Stay tuned!

Kangaroo Care

Today I got to experience a super special test thanks to Stephen's awesome nurse Connie. It's called kangaroo care and is basically skin-to-skin contact with your baby to help bonding between the baby and the mom or dad and helps to do all sorts of other things like calm the baby and help the mother with breastfeeding/pumping. Connie got the neonatologist to agree to change his respiratory care from CPAP to the nasal cannula during kangaroo care so that both Stephen and I would be more comfortable and it definitely worked out great. Basically Connie rearranged his room and machines so that we could get a lounge chair his room and then she placed him on my chest. It took a minute or two for him to settle down, but once he did, he snoozed away the entire time! And I loved every minute of it! At one point I told Bill that I was going to wrap him up and steal him away from the NICU. It was the best hour and a half I've spent in a long long time. Afterwards we wrapped him up in his snuggly sleep sak and put him back in his big boy bed. Stephen moved to the crib yesterday and as a result, we are able to swaddle him with blankets and sleep sacks from home. Even though I have to wash his blankets and things each day, it's been really great being able to take him some of his things from home. Not only can I bring his smells home for Mabel, but it makes me feel more like a "normal" mom being able to do his laundry and provide things for him.
Plus I can't wait to go buy him some more sleep sacks and blankets!

Here are a few pics from kangaroo care today. You can see that Stephen is continuing to lose some of the excess fluid. Each day he's losing a little more fluid and we're able to see little by little what our little guy really looks like!

































p.s. Hasn't the other special man in my life done an awesome job taking beautiful pictures of Stephen?! Billy has done an amazing job at taking pictures with our new camera. He has certainly mastered it way better than I have and these pictures are definitely priceless!

Day 10

Today is Stephen's 10th day in the NICU, and aside from surgery day, the toughest day yet. Dialysis is progressing, but not as well as we had hoped. He is still putting on weight and isn't losing enough of the swelling in his legs and face. His tummy looks pretty good, but other parts of him are so swollen, they look like the skin could crack any minute. Right now they are changing up his dialysis solution. The stronger solution will hopefully pull off the excess liquid from his extremities faster. It's just extremely hard to see your baby in such a state. And even though there are other good things happening too, I think it's going to be hard from here on out as we make super small baby steps toward recovery and home.

Plus it probably doesn't help that my hormones are going hay wire right now (at least thats what they tell me). Each day that Stephen is in the NICU is also a day post-surgery and postpartum for me as well.

Quick Update

Just wanted to share the good news that Stephen was taken off of the ventilator this morning! He is back on CPAP, but he's doing really great without the ventilator and both lungs are inflating really well. His left lung the other day was having trouble inflating, but that appears to have corrected itself. And his nurse Connie was able to fix that also by changing the position he was laying in to help facilitate the lung to inflate fully. He'll have another x-ray this afternoon to check his lungs again and they are changing the dressing on this PIC as we speak, and then I should be able to hold him this afternoon.

This morning he's been resting and sucking away on his pacifier while we listen to The Beatles and a little country music. This afternoon I hope to finally share with everyone some pictures and details from Stephen's baptism on Sunday. I totally forgot I hadn't shared that yet. My apologies!

Dialysis Day

I never thought we would say this, but we started dialysis today! And not a day too soon. Stephen retained A LOT of fluid overnight, and he was back to weighing over 10 pounds this morning. He put on over a pound in only a few hours. Not good. So thank god we were starting dialysis today. Almost instantly after we started the dialysis, you could see some of the fluid start to "wash away" the minute they started flushing his catheter and abdominal cavity with the solution.

There are two types of dialysis; hemo dialysis and peritoneal dialysis. Hemo is the type most people are familiar with where you get hooked up to a machine and it cleans your blood. Whereas Stephen is doing peritoneal dialysis where a solution of sugar and other stuff is pumped into his abdomen, let sit for a set period of time, and then flushed back out. Right now his dialysis is running 24 hours a day with small amounts every 30 minutes. 40 cc's of fluid goes in and the goal is to get more than 40 back out. So far, it's been working. At first everything coming out was blood, which was a bit startling at first, but he did just have major abdominal surgery. And I had to remind myself that after my c-section, everything that came out of my catheter was also blood (sorry if that was TMI).

Eventually his dialysis will go from 24 hours a day to 10 to 12 hours a day. And at some point when he comes home, we'll do the dialysis here at home during the night while Stephen sleeps.

We also had another awesome milestone today. Stephen opened both eyes today! Part way into his dialysis today as the fluid started coming off and his swelling started to decrease, he started really responding to our voices and touch and started really moving around again. Well, as much as he could with the ventilator. And you could see that he was trying to open his eyes. Eventually he opened both of them and it was so awesome to see his beautiful baby blues again! He had opened only his right once before. Billy went back to the NICU late tonight to read him a bed time story, and said he opened them even more so tonight. I'm super sad I missed it, but I stayed home to get some rest.

Hopefully tomorrow will be another big day for us as they are planning to take him off the ventilator tomorrow. He was ready today for the ventilator to come out today, but the neonatologists wanted to give it one more night just to make sure we don't have any major set backs when it's pulled. So we're hopeful that it will come out tomorrow and then I can start holding my little love bug as much as I want. Well, maybe not as much as I want, but I'll get to hold him again.

Sorry I haven't posted any pictures lately. I was kind of nervous to post the post-op pictures because they are not the prettiest with Stephen's big incision across his belly. But I'll try to take some tomorrow after the vent is taken out so you can see his pretty little face and his cool private room!

One Week Old Today

Dear Stephen,

Today you are exactly one week old and what a week it's been! You have defied all the odds, defied medicine and science, and have proven to the world that miracles really do happen. You are my angel sent from Heaven to live on Earth. I truly believe that. None of the doctors thought you would live much past birth, if at all. But your Daddy and I never gave up hope and fought tirelessly for you. And then when we thought we couldn't fight any longer, you decided to come into this world kicking and screaming like the fighter that you are.

And for the past week of your life, you have continued to fight and defy the odds by showing you are not a quitter. That you are strong enough to endure broken kidneys for 12 weeks and a 7 hour surgery to remove them. Like your cousin Norah and Aunt Jess say, you are a real-life superhero!!! And a little bit famous too :) People all over the country have been reading about you and praying for you. You are so loved by so many! But no one loves you more than your Dad and I. You have and forever will have every inch of my heart and are the best thing that we will ever do. Your father will forever be your protector, no matter what, and I will always be here for you when you need a shoulder a lean on. Know that there isn't a mountain we won't move to make you better. I know that life won't be easy for you, but we will always be there every step of the way to hold your hand.

I love you more than words can say and I promise that you'll be home very soon! There is nothing that would make me happier than to bring you home and be able to hold you in my arms day and night. And we will get that chance, Stephen, I promise you.

Be a strong boy and keep fighting!!!

Love
Mommy

Surgery Was a Success!!!

Our prayers have been heard and answered once more...Stephen has made it through surgery and is recovering in his own private NICU room as we speak!!!! The surgery went really well, albeit really long, and he has successfully had both kidneys removed, a GI tube put in (a feeding tube), and his peritoneal dialysis tube also put in. We expected that the surgery would be between 3 and 4 hours. But the surgery was almost 7 hours from the time that Bill and I left Stephen in the OR, until the time the surgeon came to talk to us. It was a grueling, long 7 hours of waiting, but we knew all along that the surgery might be longer and that Dr. Kim would take his time making sure everything was exactly perfect.

The surgery actually took longer than expected because of the size, shape, and orientation of the kidneys. They were much larger than expected, so it was very difficult to remove the first one, and they were set deep in his abdominal cavity and were sort of turned. So the incision had to be bigger and it was a bit trickier to remove them. But our amazing surgeon, Dr. Kim was able to do it, and essentially saved our little guys life.

He is now looking much better and sleeping the night/day away for awhile. His tummy is completely deflated, his color is fantastic and it's wonderful to finally see his beautiful little face and nose. He no longer has the CPAP machine, but for the time being is on a ventilator until his little body can heal a bit from surgery. And he now has his own private digs in the NICU! They have given him the greatest little room all to himself and His amazing nurses, Jessica E., Jessica T., Val, Belinda, and Lisa, will all continue to take care of him. I know it doesn't sounds like a big deal, but it is a big deal that he moved rooms in the NICU but is allowed to keep his established nurses. I keep joking that he's got his nurses wrapped around his already!!!

And the best part about today, was that the grandparents were able to catch a glimpse of him for the first time. We asked that when they wheeled him down to the OR from the NICU, they wheeled him past the waiting room. And they were able to grant our wishes. It was a quick pass, but an important and emotional one.

Once again, bill and I owe you all a huge heaping pile a gratitude for all your prayers, love, and support. We have been receiving support and prayers from all over the country. We could never adequately thank you all and explain in words what that has meant to us, so I won't try. But please know that we love you all and sincerely appreciate every effort to help save our little boy. God bless you all!!!!!

Love
Lindsey

Update

It's been 5 hours since we left Stephen in the OR. Still no update or word about the status of his surgery.

Checking Out

Yesterday was an awful day. There is no other way to put it. And awful doesn't even really begin to explain the feelings and emotions you feel when you have to leave your child in the hospital while you go home. Especially when your you're leaving the hospital for the first time. It really is bittersweet though because 1) we never even thought we would get the chance to have these feelings (we thought we would be leaving the hospital mourning our baby)' and 2) we know he is in amazing hands and being well cared for. But it is still really really hard.

Our plan for today is to go back to the hospital in a few hours, spend some time with him, and have him baptized today before his surgery tomorrow. It will be just Billy and I and the Chaplain since family members aren't allowed in the NICU during cold and flu season. Which is also really hard. The grandparents and god parents haven't even gotten a chance to see Stephen, and won't until he comes home.

This afternoon, he'll receive a special line called a PIC line that will be where all his wires and tubes will go since they will need access to belly button where everything is right now. And then hopefully we will get a chance to hold him again either late tonight or tomorrow morning before his big surgery.

Yesterday was also tough because Stephen is getting increasingly uncomfortable and fussy and upset. We think its because his belly keeps getting bigger and more bloated and he's probably hungry too. He can't get any real nutrition other than through his IV because of the swelling and bloating and not having kidneys that can process anything. But I thought I would share another couple of cute photos from the past two days. But you can really see now big his little belly getting. His surgery couldn't come at a better time and will hopefully relieve a lot of his discomfort in the end.

The Best Surprise

I think I mentioned before how amazing every single nurse and doctor has been here at INOVA Fairfax hospital, but today they really went above and beyond. Bill and I went down to the NICU this morning around 9:30 to say good morning to our little guy, but couldn't see him because they were changing his tubes and things. So we went back to our room to shower and would go back later. While we were back in our room, the dialysis nurse came by to chat and mentioned she had seen Stephen and that you could really see his face really well today, so make sure we had our camera when we went to see him. We also got a call from Kelly, the nurse coordinator and our champion, saying she was sorry we couldn't see him earlier but that he would be ready at 11:30 for us.

So we got cleaned up, grabbed the camera, and headed back to the NICU. When we got there Kelly was there and his day nurse, Belinda, who we also love. After washing up, we were told the amazing news; we were going to get to hold Stephen. Kelly and Belinda championed for us and Dr. Lazarte agreed that we should be able to hold our son. So they made it happen. And it was the most amazing, emotional moment for Billy and I. I don't think there was a dry eye in the NICU when Belinda handed me my baby. I held him and rocked him and sang to him and told him how he would always be the most special boy in the whole wide world. And I also told him how famous he was and how many people want to meet him! I held him for about 30 minutes and then Billy got held him for awhile. Words just can not express how special that time was.

Afterwards, we learned that all our doctors and nurses were in on it; my obstetrician, the nurses, the doctors, and our social worker. They are all such fabulous people!

Here are a few pics we took from today:






































We also found out today when trying to figure out if we could donate blood for his surgery on Monday in case he needs a transfusion, that Stephen's blood type is O positive. Which means he can only get O blood type, which neither Billy or I have. Hopefully that won't affect him receiving a kidney from a family member, but I am thinking that might be w problem down the road. But, we will cross that bridge when we get to it.

Up next....discharging from this bubble we have been living in for the past 3 days. We will be heading home tomorrow (Saturday) evening. So I think tomorrow will prove to be another difficult day as we are leaving the hospital, but our baby is staying.

Time to show off our little monkey! He's a bit swollen and bloated right now since he's retaining fluids (poor little guy can't pee), but once he gets on dialysis next week, the swelling will go down and he'll be back to a normal newborn weight. Today he actually tipped the scales at over 10 pounds!

So Without further ado, here is Stephen Charles:


















































The last 5 photos were taken right after he was born in the OR and the first set of photos were taken last night when we got the chance to help give him a bath. It was so awesome to get to bathe him and see him without his CPAP mask, change his diaper, and just get to see and feel his little body. Just to give you a little info, the "mask" you see on his head is his CPAP machine. It's oxygenating his blood and helping his lungs to develop by reducing stress on the lungs. And the tube in his mouth is sucking out any extra air and fluids from his tummy as a result of the CPAP. And yes, that is a pacifier you see! The big "block" on his left had is his IV and the gold heart on his chest monitors his temperature. The rest of his monitoring devices and cords for things like blood pressure go through his belly button. And the most exciting thing about our bath time last night was seeing him open his right eye. That was the first time he opened his eyes and it was such a special moment! His eyes are a beautiful dark blue/gray (like most babies). And we love our little monkey to pieces!!!!