PostOp Day Four 5:45pm

So Riley spiked a fever this afternoon that could be due to numerous things (the excess fluid in her lungs, her general not feeling well, an infection in her incision, an infection somewhere else in her body). So they decided to give her tylenol. This brought down her temp a whole degree in about an hour. She has slept most of the day and even after two suppositories we still only have one small little poop. So most of her current set-backs (temperature and not keeping O2 up without help) could be from the excess fluid in and around her lungs which we are treating with excess diuretics. This is supposedly normal for post surgery babies. I was just hoping that for once in her short life stuff would go 'according to the book' for little Riley, but that doesn't seem to be the plan for her. Hopefully though once we get back home she will start to get back ahead of the game.

PostOp Day 4 10:30am

So Riley will be in the hospital for at least another day. Her lungs do have some fluid in them and their is a little leakage through or near the patch that they put in (they did tell us this may happen, so not completely unexpected). One other positive that I forgot to mention about last night was that I got my first smiles from Riley - granted they were at 2 or 3am, but I saw two or three of them. So my smiley girl is getting back to herself a little.

PostOp Day 4 9am

So we had a rough night last night. Riley woke up screaming about every 2 hours. We don't really know why, but around 1am I realized that I hadn't seen a poopy diaper since the surgery. The nurse felt her belly and it was a little hard, but not awful. Additionally every time they tried to ween Riley off of the oxygen (she is on 1/4 of one MIL - which they call a wisp of air) her O2 stats would drop. So we can't go home with that being like that. Also they have added another diaretic to her Lasix and Aldeactone - this is due to them seeing some liquid around her lung on her XRay this morning. This is normal, but a minor set back. We are glad that this stuff happens in the hospital though and not once we get home. On a positive note her resting heart rate last night was down in the 150s - this is from her normal 170s-180s for our little hyperactive one. So our plan to go home today is probably foiled, but we will see. Thanks again to everyone for all the kind words about the surgery. Riley is truly a fighter and honsetly the strongest willed person that I know.

Clean After her Bath

Holding Riley

Today I am feeling a lot more comfortable holding my baby.  Shortly after I arrived at the hospital, Riley woke fussing a little bit, so I scooped her up as I was advised is the best way to pick her up.  Picking her up calmed her right down.  I took her to the rocking chair and held & talked to her until she fell back asleep.  It's an amazing feeling to hold her and know that we are not hurting her - that was a big fear of mine, that holding her would not feel good to her.  Of course as soon as I put her back in her crib, Riley woke right back up.  Right now she & Josh are listening to music on the iTouch and Riley is singing along, just as she did before the surgery.  This is something that we didn't think would happen right away.  Josh even got the nurses to give us a spoon so that we could reintroduce that to her.  She took right to it and has now rediscovered that her fingers & thumbs can still go in her mouth.  She seems to be feeling better today than yesterday; I can only hope that each day that goes by makes her feel even better.

PostOp Day 3 12:30pm

So Riley had a great nice last night and in fact was cooing and talking with the night nurse a lot. Nana and I came down to see her this morning and right after we got here she got an echo of her heart. She has a little leakage through the patch, but that is to be expected and we were told that would happen before the surgery. Hopefully the scar tissue will start to grow and that leakage will be stopped. Thank you again for all the love and support. They are still talking like Riley could go home tomorrow.

Waking Up

Riley just woke up while we were in the room and she is amazing.  Eyes wide open, looking at me & Josh.  She even cooed at us.  Hopefully that is a good sign for her recovery.  I'm hopeful that the cooing means she won't be taking too much of a step backwards with her development.  Her arms & legs are moving so the pain meds must be doing their job & keeping her comfortable.  Thank heavens for that.

PostOp Day 2

We got a call from Riley's nurse this morning as we were walking out the door - she was being moved to room 2149 on the Stepdown Unit at 10:30 this morning.  What wonderful news!  Riley had a great night, no more breathing tube, no more chest tube and several of the IV's have been removed.  She's on O2 via the cannula, and right now she's actually sucking on a paci (they have it positioned under the cannula so that it stays put for her).  Riley is sleeping peacfully and occassionally making some sounds.  I'm hopeful that today is another good day. What an amazing little person she is, we are so blessed to have her in our lives.

Post Surgery 9:30pm

So I just want to start off by saving how much Zoey amazes me every single day. What she did at school today was something that moved me so much. She is a wonderfully caring little girl who has her moments but underneath the tantrums has her heart in the best place.

So Riley had her breathing tube removed at 6:30pm. She has been doing great - her heart rate is down to 150 and her respirations are 30-35/minute (just as a reference point she was normally at 180 resting heart rate and sometimes upwards of 60 breaths/minute). Her blood pressure is still high, but that is to be expected and they will keep monitoring and giving medicine for it. She does wake up every once in a while and she gets upset about it, but even when she is upset her O2 level in her blood never goes below 98! She used to drop in to the low 90s or high 80s. So everything seems to be going well for her. Michele and I both noticed and Nana has commented on it tonight even - she has a different pink color to her skin then she had presurgery. I'm sure it is just our eyes playing tricks, but she has more of a whitish pink to her then her old color. She has even started her leg kicking and a lot of mouth movements.

Now for the big news - if this keeps up at the pace we are going, there is talk of her going to step down tomorrow morning!!! Unreal how much of a fighter my littlest girl is. I have always thought of myself as strong willed and able to get through a lot, but Riley has me beat by miles and miles. I have never been more proud of anyone in my life then I am of my two girls today. One fought for her life and the other did a courageous and selfless act for someone else. For a 5 month and 4 year old I think it is huge steps. Thank you again to everyone for the outpouring of support, love and congrats. When Riley gets older she will be amazed at the amount of love and support that she had.

What a Good Big Sister

We came home to a sweet surprise, Zoey, all on her own accord, stood up in front of her class today and asked her friends at school to make cards for her baby sister.  She was so proud to show us all the beautiful pictures that her classmates made for Riley.  Once Riley is moved to the Cardiac Stepdown Unit and has her own room, we'll be sure to bring them in for Riley to see.  I couldn't be more proud of my big girl.

Home for a while

Josh & I opted to leave the CICU around 3:40 today, partly because we wanted to beat the crazy Atlanta traffic and partly because watching Riley trying to wake up is a painful experience for a parent.  She'd open her eyes (& I hope she saw me sitting there so that she didn't feel alone) but she couldn't  make any noise due to the breathing tube down her throat.  He little legs would start kicking and her arms were waving about.  One of her arms was restrained due to the fact that the nurses know that Riley has a history of pulling out her IV's and she really needs to have them in right now.  Riley's nurse, Amelia, gave her a mild sedative to help take some of the edge off.  They are hopeful that by the end of shift (7 pm) or shortly thereafter, they will be able to take the breathing tube out. 

The cardiology fellow, Dr. Iannucci apparently came into the CICU just after we left.  He actually took the time to call Josh and check in to see how we are doing.  Josh thinks I have a crush on him, but the truth is that Glen Iannucci looks just like our friend Mark Solimini, so I guess I just feel comfortable around him - and he has a great bedside manner that automatically makes you like him. 

Josh is planning on taking his mom up to visit after the rounds tonight; the CICU is closed to any visitors during rounds due to the fact that the CICU is an open area and for privacy factors, they cannot discuss their patients around visitors.  Hopefully they will be able to report back with good news that Riley is doing great.  At least that is what I am hoping for.

Post Surgery 2:15pm WITH PICTURES - LITTLE INTENSE

So Riley has already started to wake up a little. Her ventilator was started in the CICU at 60% oxygen and 25 breaths/minute. She is already down to 50% oxygen and 20 breaths/minute and she is actually taking 7 extra breaths/minute on her own. She has taken a normal amount of blood after surgery and her chest line (which is supposed to help get out excess fluid/blood/buildup in her chest cavity) has looked good with a normal amount of fluids coming out. Her catheter has had a good amount of urine. She really looks good and we were so much more prepared for post op then before. No one has almost passed out or lost it (ok- I teared up a little). Her skin is nice and pink and she seems to be at a relative comfort level.

Surgery Day 11:30pm

The surgeon just came out and spoke with us and Riley did great!!! We were a little worried as around 10:45 a nurse called and said that the surgeon was coming out to speak to us and they were closing up - that was only 2 hours in to a '4 hour surgery'. Well this is Riley's 2nd surgery and both times she has finished in much less time then they originally stated, so either she is a phenomenally easy patient or the surgeons are like the airlines now and under promise/over deliver.

Her heart rhythm is fine right now - so almost 100% sure that she won't need a pacemaker. They also went through a easier way then they had originally thought they were going to have to. They are hoping to get her breathing tube out this afternoon.

So our little one is ok for now. One huge heart hurdle leaped over. She's taking food by mouth, she has a complete ventricle wall - my little flower is doing great. Thank you all so much for your love, thoughts, and support.

Surgery Day 10am

We just got our update call and Riley is on the heart lung machine and 'everything is doing fine'. Granted today's 'doing fine' is defined as my little one having her heart cut open and having a machine breathe for her, but I'll take that over the alternative.

Rain & Sun

Today started out rainy, which was appropriate for the mood I was in driving my 20-week old to the hospital this morning.  The sun keeps popping it's yellow face out and I am choosing to take that as a good sign.  Hopefully the sun is shinning his face on our surgeons and all the nurses and support staff that are working on my baby girl. 

Josh & I are trying to stay strong as we sit in this very nice, but totally sucky surgical waiting room.  I keep telling myself that things could be worse, and we will all get through this day.

Surgery Day 8:45am

We have just gotten a call from the OR and they have started Riley's surgery. Here's hoping that they are swift, accurate, and good today.

On a good note - today is a slow day in the OR. Means less children have to go through this stuff.

Surgery Day 7:30am

So we arrived at the hospital around 5:45am and around 6:30 they gave Riley a sedative. I (dad) took the opportunity to snuggle up with her and help her rest. So we napped till they came to get her at 7:20. At that time Riley woke up and gave mom and I a little smile. Mom and I are suprisingly good - this may unfortunately mean that we are getting used to doctors taking our baby from us. They will be calling us once the actual surgery starts which should be around 8:30 or so. Thank you again to everyone yesterday who sent along their thoughts and well wishes. Sorry Michele and I didn't answer our phones much - we just wanted to get through the day. We still greatly appreciate all the love and caring that everyone has given - it means the world to us.

The end of the PreOp day

So we finally left the hospital around 4 pm, finally.  Josh stuck to our PreOp home base room to finish talking with the surgical fellow and sign the surgical consent forms, and Riley & I took a mini-tour of the hospital.  We first went to Radiology and had her chest x-ray done, then we went off to the Lab to have some blood drawn.  About 45 minutes later we headed over to get an Echo of her heart.  That took almost 2 hours!  If they are not prepped for surgery tomorrow, it sure won't be for lack of pictures of her heart.  They were quite thorough ... not that I am complaining, I'd rather they be thorough with my baby's heart.

We're as ready as we are going to be for the big day.  I'm sure it's going to be a lot of sitting around and waiting, but they need to take all the time that they need

Clean Baby

Clean & ready for tomorrow's big day.  Check me out scar-free for the last time

Zoey & Riley snuggling 

3pm...and we are still here

So our '4 hour' preop day has turned into 6+. Riley is in the middle of her EKG and heart scan - this is so they can have an accurate idea before they actually go in.

Talked with one of the surgical fellows - who by the way was already an adult heart surgeon in his home in Ireland when the main pediatric heart guy announced he was retiring, so he came here to learn it - and I asked him why he choose CHOA. He stated, 'Of the 70 Pediatric Heart Surgical Units in the US, CHOA sees the 3rd most patients and is ranked #2.' (by whoever does these sort of rankings). So that makes us feel really good. Of course this was right after he stated about 4 other potential complications that no one had told us about before, with the biggest concern being 1) brain malfunction where long term she may lose speech ability and slowed motor skills on 1 half of her body. This is rare, but they have to tell you everything.

PreOp Day

We started our day by getting up like any normal day.  We got up, dressed and dropped Zoey off at PreK, then headed down to Egleston.  We came loaded with stuff ... stroller, diaper bag, medical journal, meds, Kindle, iTouch, and Zoey made sure that Riley had a colorful stuffed fish to hold & look at.  We got checked in at the 3rd floor PreOp clinic and were seen right away.

We've actually been given a room that is our "home base" for the time that we are here today.  So far doctors & nurses have been coming to us, but at some point we'll venture out for an Echo and Chest X-ray.  What we know so far is that we're the first surgery of the day tomorrow for Dr. Kirshbom, which means we have to report back here at 6:00 am - at least we should have light traffic tomorrow.  Riley can have her normal meds and feedings until midnight, then we can give her Pedialite until 5:00 am, then nothing else. 

Dr. Wilson, the anesthesiologist came and gave us a lot of information.  There will be soooo many tubes & wires coming out of Riley tomorrow, I think Josh counted about 15.  There will be several IV's, one in her neck & possibly one in the groin area due to these housing large arteries.  There will be an exterior pacemaker, drainage tubes and wires into the heart for monitoring purposes.  I'm sure I'm forgetting many, but I know it's a lot.  Dr. Wilson expects that Riley will start waking up tomorrow late afternoon, possibly between 2 and 4 pm, and depending on how she's doing, hopefully the breathing tube will be removed by tomorrow evening, or Saturday at the latest.  Depending on who it comes from, we can expect to be here 3-5 or 4-6 days, tomorrow counting as day 1. 

Riley is just enjoying today for some odd reason,  She's talking up a storm and kicking her blanket off.  Those legs just keep on moving and she's enjoying listening to her dad's iTouch.  Hopefully this happy baby won't be gone for too long

Pre PreOp Day

So I have been getting some sleep unlike my poor wife, but that is only because Zoey has been running me around the back yard with her best Mia Hamm impression. My big girl did very very well at her first soccer practice and I fully expect the US National Woman's team to show up at our door at some point in the next week. I am very happy that she enjoys a sport - I think it will be incredibly helpful as she grows up to be involved in a team. I think it will help her self esteem and build her confidence - things that as a father of a girl I am always worried about.

My littlest one is sleeping restfully not knowing that we now count the time away from her surgery in hours and not days. She has been very chatty and wonderfully smiley the last couple of days. She has also started to enjoy the eating, even smiling and talking throughout her meals. Like Michele I am worried about how far she will backslide after surgery. No matter how far we will pick her up and run back up the hill.

I am glad that her surgery is here in a way - this way she and we can start tackling whatever is next on her list. I am more scared then I expected though. I fear for the moment when I have to hand my baby over again to the nurses on Friday. I fear for the first time I see her after surgery and I am in deep fear of the moments when she starts to wake up from the surgery and has that awful scared look in her eyes. While we will all look back on these days as huge milestones and joyous 'moving forward' type days - I fear that when we are in the middle of them they will feel anything but joyous.

Thank you again to everyone for their thoughts - our daughter and all the other children who will be around her will need them. Keep watching the blog on Friday for updates as I don't know how many people we will be able to directly update. We will post tomorrow what time the surgery is supposed to start and then Friday we will post when it actually starts.

Getting Closer

Tomorrow is the pre-op day.  Josh & I have been preparing a list of questions to ask so that we can set our expectations.  Hopefully we'll be more prepared this time than for the g-tube surgery.  We were completely blind sided on that one - to the point where I thought I was going to throw up from the stress of it all.

I am anxious & scared.  Each hour that goes by brings us closer to a good & bad thing.  I am so not looking forward to spending any time in the CICU.  I hate that there is any reason for such a place to exist.  How horrible that any parent has to have their baby/child go through heart surgery.  It's just not right.  I appreciate all the doctors & nurses, but if I had a wis, it would be to make their jobs obsolete.  I'm hoping for some sleep tonight; maybe I'll be able to shut my brain down long enough for that to happen.

Not Sleeping

The last two nights have been pretty rough for me.  As tired as I am, I am  not able to sleep.  I have been tossing & turning all night and just doozing here and there.  By this morning, my eyes were a bit puffy and I have a nagging headache from the lack of sleep.  I know this has to do with the fact that Riley's surgery is only 2 days away.  Beyond the basic fear of the surgery, I am afraid that all the progress we have achieved will be washed away after the surgery.  Riley has been so chatting and smiley the last couple of days (even talking in her sleep), it just breaks my heart to think that by Friday afternoon (or evening depending on surgery time) she is going to be in pain.  There is no way about that one, my poor sweet 5-month old baby will be hurting, not cooing and enjoying life.

On a good note, Zoey started her soccer practice last night at Newtown Park.  Zoey is on the Sharks, a co-ed 4-year old team.  Josh was able to take her to her 5:00 practice and he told us that the coach was shocked that this is the first time that Zoey has played on a soccer team.  She was a great listener and had a lot of fun running after her purple soccer ball.  Zoey came home thrilled to tell me & Nana all about her practice and the things that they did.  She is eagerly looking forward to her 1st game on March 12th

Count Down ...

We are a little less than a week away from the big day and as each day brings us closer, I get just a little bit more anxious.  It's hard for me to talk about this (mom I'm talking to you), but I find it easier to write about it.  I guess because no one is trying to talk back or interject their own feelings of concern.  Today, I have a broken but happy baby.  She's just starting to eat, and she coos and communicates with us.  Come Friday I will have a repaired (the hospital's term), but in pain baby.  I think the idea of my baby being in pain and not being able to do anything about it is what makes me sick to my stomach.  How awful for Riley not to be able to express how she is feeling.  I only pray that her recovery is not too difficult for her and that she won't remember any of this time.  I guess that's also why I feel the need to document this part of her life; so that down the road, we can show Riley just how tough she was, and just how much she has gone through in her short little life.

I am petrified of the actual surgery - no tiny baby should have to be on bypass with their little precious hearts.  No tiny baby should have to be intubated for the 2nd time in her life.  Just typing this out brings a big lump to my throat and tears to my eyes.  And we're the lucky ones, so many other babies have worse conditions and have spent far more time in the CICU than Riley has.  Hopefully everything will go smoothly and we'll be bringing our baby home.  My heart literally breaks for the families that are not as lucky as we are.  We live close to a great hospital and are fortunate enough to have a fantastic team of doctors working to make our baby girl better.

I am quite certain that each day that goes by will be just a little harder for me, and I am also certain that the 4-5 hours that we are waiting in that special surgical waiting room will be some of the worst in my life.  Please keep us in your thoughts and prayers during this difficult week

Holy Cow!

So, I don't know if anyone has had to deal with DFACS, but let me tell you, it's a crazy thing.  We received a letter at the beginning on January telling us that Riley's application for the Katie Beckett Demming Waiver has been delayed and that we had to call a certain number to find out.  Well, I have been calling that number every single week day since - I've lost count of how many weeks that is - the phone just rings and rings, but has no voice mail system, or you just get a busy signal.  Busy signal???? With call waiting, I didn't think the busy signal still existed.  Well today was the day; I actually got a human being on the phone!!!  I think I may pass out from the shock of it all.  Well, he couldn't help me, but at least I know our Case Workers name and direct phone number now.  I have left a message of Ms. McCoy and we'll see if she's tru to her voice mail which says I will have a returned call in 24-hours.  Keep your fingers crosses!!

Eating

This has been quite a week with us (as parents) and Riley figuring out this whole eating thing.  We didn't have that traditional set up where she had a bottle to helpprep her for solid foods (or semi-solid as the case may be).  We've been feeding Riley a steady stream of watered-down sweet potatoes and she has not been the biggest fan of this concept.  Mommy seems to have the magic touch, beacuse the only times she doesn't cry are when I feed her.  That, or by the time I get to feed her, she's starting to get used to the whole process.  Now we're having to deal with spit up, which raises questions since Riley had the fundoplication (the wrapping of her stomach upon itself to prevent reflux).  So I called Dr. Sherrod, our GI doc, to confirm whether or not this is something that we need to be concerned about, or is this a "normal" baby thing.

That seems to be a big question when ever anything weird or different happens.  Is this a normal baby thing, or is this a Riley thing.  You'd think having a 4-year old we'd know what we're doing, but some days it's like the small manual that we've created in these 4 years has been completely thrown out the window and we're starting out fresh, like brand new parents.  Good thing I am not afraid to call up the doctors office and ask my questions.  It just stinks that I have to preface with, my daughter has 22q Deletion Syndrome, which envitably opens to the door for a flood of questions from the nurse who answers the call.

Surgery is only 11 days away, and I still find it a bit surreal.  I guess it won't seem like it's really happening until Josh & I are sitting in that scary surgical waiting room for the 4-5 hours of the surgery.  In loving on Riley the other night, Josh said to her; "Now if you see a white light, you stay away from it".  I know that the doctors (cardiologists) have been super confident that everything is going to be fine and dandy, but that is a legitimate concern of ours.  What if we are that small percentage where things go wrong.  If you are a praying person, we'll take all the prayers that we can get to help ensure that things go smoothly.

Things we have coming up ...

1. Our Babies Can't Wait speech therapist will be coming to the house this week for a theratpy session
2. Riley will be going back to see Heidi, the speech therapist with Children's Healthcare of Atlanta for a follow up to the swallow study
3. Our routine cardiologist appointment

Woo-hoo!

Yesterday was a big day for Riley.  Josh took her down to Scottish Rite for a repeat swallow study to see where is is in her swallowing abilities.  The short of it is that Riley can swallow!!!!  Riley had been given some yummy Barium to swallow and Josh said he was able to watch the liquid actually do what it was supposed to and go where it was supposed to.  So my tough little cookie was able to taste some sweet potatoes yesterday.  This won't be an easy thing and it may take a couple of months before Riley knows how to actually eat, but this is a HUGE step in the right direction and we are so thrilled for our little girl.  We're prepared to have to take extra steps with Riley through out her life and this just shows that we are on the right track.