Happy Days

Wow, what a great past few days for little Davis!  He is eating and sleeping well; he is still fairly inactive (which is good; he's still healing!), and he is full of smiles.  He is quite clingy and still fusses at times in which he wouldn't have prior to surgery, but I would too if I were him!  Between how he appears physically and how he is behaving, I'd say he is doing quite well for less than three weeks out from heart surgery!

Besides a little update, I want to share with you some information about Down Syndrome Awareness Month, which is October.  Buddy Walks are being held all over the country in order to raise awareness and promote acceptance of people with Down Syndrome.  The walks are the main fundraisers for local chapters of the National Down Syndrome Society.  October 13th is Davis's first Buddy Walk, and I am so excited!  We have already had several family members and friends join our team, which is called "Little D and Company," and have also raised $150 of our $500 goal so far for the Chattanooga Down Syndrome Society.

Please visit our fundraising page at http://www.crowdrise.com/LittleDandCompany if you would like to make a donation in honor of Davis.  If you would like to walk with us, visit https://www.keysecure.com/chattanoogadownsyndrome.org/index.html to register.  Note:  if you want a t-shirt, you must register by Friday the 28th at 5:00, and remember to put Little D and Company as the team name.  This is our first opportunity to publicly show our support for Davis and other members of the community with Down Syndrome; it's going to be a fun event for all.  A big thank you to those who have already donated or registered!

Well, Davis doesn't go back for a doctor's appointment until October 8th and/or 9th.  Let's hope the next week and a half continue to yield improvements for Davis.  Hopefully, we will be cleared to resume normal activities!  Thank you all so much for the continued thoughts and prayers. :)

2 weeks and 2 days

Well, it's been two weeks and two days since Davis had open heart surgery.  Considering the circumstances, I'd say he is doing extremely well!

Our challenges this week have been with Davis's eating and sleeping.  His appetite is not what it used to be, and we had concerns that he wasn't getting enough nutrition and hydration (his doctor says he is fine and eating will pick up).  Also, he is having trouble taking naps during the day, making for a very challenging day and especially evening.  However, each day seems to get better; in fact, yesterday was a TREMENDOUS day.  He ate a LOT and got in two good naps with some diligent coaxing by me.  We're not having too much trouble with night-time sleep besides occasional, brief crying episodes when he wakes.

All this has been disappointing because Davis has always been an excellent eater, has always slept through the night since he was one month old without any trouble at all, and has consistently had such a pleasant, content demeanor.  So in a way, I feel like I don't have my same little boy anymore.  But since each day is improving, I feel that he will be back to himself in a few weeks.

Physically, he seems to be doing great.  His wounds look good, and each day he seems to get stronger.  I took a video scan of his body today, so that I can compare how everything looks days and weeks from now; I thought about posting it but then decided that no one really wants to see his yucky chest tube wound.  I will get a picture of his incision soon though and post it - I'm amazed at how wonderfully it has healed!  Additionally, I don't have to worry about Davis rolling across the room...yet.  I'm sure he'll get there soon, he was rolling all over the place prior to surgery.

Yesterday, Davis turned 7 months old - unbelievable!!!  Before you know it, he'll be graduating high school. ;)  Is that the cutest smiley face or what?

Back at Home

I know...just because we are home with Little D does not mean I can stop posting about his progress.  I am reminded of this fact by the messages I have received from fans of Davis asking about him (which I don't mind of course...thank you for your concern!).  I promise I will continue to keep up this blog; it's just been busy around here!  At the hospital, we had lots of nurses and doctors to help us...here, it's just us!

Poor little Davis is not himself right now.  Those of you that know Davis know that he just may be the most pleasant, chill baby ever.  But he has not been a happy camper - he just doesn't feel good!  I suspect that not only does he continue to have pain, but he is a bit traumatized from his experience.  I would be too; his whole world was turned upside down!  I think it's going to take awhile to get him back to being comfortable, physically and emotionally.

Our new situation is hard on me because I'm already tired and stressed about caring for him the best I can (I am slowly building confidence with the medicines and injections), and he is requiring more attention to help him be comfortable, not that I mind.  Gramma came for a couple days to help, and now DD is here.  Not only that, we have had our kitchen stocked by Matt's parents as well as our best friends in the world!!  When we returned home from Nashville, we were surprised with "Welcome Home Davis" signs and lots of food and goodies to keep us fed for several days.  Sneaky friends!!  We love you!

Our cardiologist visit yesterday did not result in any new findings.  Dr. Johnson pretty much confirmed what we already knew.  He will closely watch the right leaky valve as well as the blood clot.  He doesn't think that Davis's lung is collapsed at all but sees some fluid in and around the right lung on the x-ray.  I am surprised Davis isn't glowing from all the radiation from the numerous x-rays he has received so far in his lifetime.  I am not much for modern medicine for the majority of human illnesses, but I definitely appreciate it for helping with the issues we face with Davis's heart.  Because of such medical advances, Davis will most likely be able to live a long, happy life!  All the tests and medicines make me cringe, but it's necessary in his case.  And I LOVE Dr. Johnson and know Davis is in good hands.

For those of you not on facebook, here is the picture from Davis's last day at the hospital - cute little buddy!  I'm too lazy to take and post more pictures today, but don't you worry, I will get some good ones soon (it's almost time for 7-month chair/bear photo!)...I just wanted to get this information out while I had the chance because I know so many of you care and want to pray for specific concerns.

Heading home

We are heading home from the hospital! I cannot believe how quickly my little man has healed! He is full of smiles today and happy to be out of that hospital. It felt so good to be able to hold my baby without all the wires and tubes and dress him in his own clothes. While Matt and I are thrilled to be bringing him home, our journey still continues...

Yesterday Davis had a full echocardiogram completed to look closely at his heart post-operatively. The most intricate part of Davis's surgery was making two valves out of one. The echo showed that the left valve, which is the most important valve, looks perfect - this is wonderful news! But the right valve has moderate to severe leakage. This is disappointing to hear that the repair was not perfect. It's quite possible that the valve will thicken with scar tissue over time and will not cause problems down the road. At this point, another surgery is not recommended. It's simply something that will have to be monitored.

Additionally, Davis's chest x-ray this morning showed more fluid on his right side. I'm frustrated because over the entire week we've had this problem with his right side, and honestly I dont think the doctors know exactly if it truly is fluid, or a partially collapsed lung, or both; they said it's difficult to tell. So we are treating for both and we'll see the cardiologist on Monday.

The next few days and weeks will continue to present challenges. I am most nervous about administering his medications correctly, particularly his injection. Plus I am so sleep-deprived I am worried about making a mistake; my mental function is extremely poor right now!

I don't mean to cause this post to sound negative; I just want everyone to know about the present concerns. There is still so much about which to feel positive! Davis is alive, his heart is better than it was, he'll continue to heal and feel better, and all of this really is a miracle!  And the biggest miracle of all is Davis - he is my hero.

I took some very cute pictures of Davis today, but because I am not technologically inclined, I can't figure out how to get them to the blog using my iPhone. I'll have to do a special picture post later.

I can't thank you all enough for all the support and encouragement!

Day 8 - End In Sight

It's Friday - one week ago at this very moment, my little baby was having a life-saving operation.  And look at him now!  It's just incredible.

So here's Davis's latest update:
His right lung is only partially collapsed, and it's better today than yesterday.  It's not a huge concern right now and should get better with a respiratory treatment called CPPD, which he actually likes, and more movement on his part.  He is in some pain today when he moves and coughs, but we are treating the pain with Tylenol and oxycodone.  His remaining chest tube will be removed shortly, along with his pacer wires; this should result in less pain and easier mobility - yay!!  Did you notice looking at the picture that he is off his oxygen? :)

Davis is eating well today!!  -almost back to normal.  And I was able to get two half-smiles out of him today, despite his pain.

We are actually talking about discharge tomorrow.  If not tomorrow, then Sunday.  Can you believe it?  We still have to get that lung functioning better, but there is not much doubt about its improvement.  There is always the possibility of another setback.  But we are planning on discharge during the weekend and tying up our loose ends today since it may be our last week day here.  CRAZY!!!!!!!!

Almost back to his old self!

Day 7

Hi, Everyone.
It's Patsy here, AKA Gramma.  It is pretty late on Thursday night, and Kari has finally been convinced to try to get some sleep.  She and Matt got almost no sleep at all last night.  Davis was uncomfortable through the night.  Right now, Matt has had a little nap and is feeding Davis.
It is great to see Davis eating.  I have not gotten a big smile out of him yet, but I can tell it is coming.  He is starting to communicate with his eyes, his signs, and some cooing. 
It has just been a difficult 24 hours with his comfort.  He hurts but can't really tell us where.  A new development is his collapsed lung on the right side. 
So Kari asked me to do this blog update.  Short and simple.  But she knows that so many are looking for the updates each day.  I plan to do another guest post when things settle down that will be more reflective in nature. Sorry no pictures this time.  Thank you again for the tremendous support and all of the prayers.
Good night all.

Day 6 - Moving On Up

What a great day for little Davis!  And a BUSY day.

We are out of the ICU!!!  This is huge!  We came up to the regular pediatric floor with oxygen, a feeding tube, and one chest tube.  That's pretty good!  However, we started fluids because we are having some trouble with feedings.  He did very good on his first bottle yesterday, but we think that the food hitting his stomach caused some tummy troubles.  I can only imagine after not eating or pooping for five days that it would not feel very good!

So in order to get some nutrition back into that little body with the healing heart, his feeding tube and fluids will meet his nutritional needs, and he can focus on resting.  Tomorrow we will get back to work with feedings.  Getting out that last chest tube and letting his throat recover from being intubated will help him.  Our other focus is to keep him changing positions and elevated in order to get rid of some chest congestion.

Davis had music therapy today!  It was beyond cool.  The lady had such a pleasant, soothing voice.  Davis absolutely loved it.  The music therapist said he has an amazing attention span for someone his age.  It was therapy for Mom and Dad too.

Davis had lots of visitors today!  It is easier to visit now because this floor doesn't have all the limits and rules as the other floor.  Our room is MUCH more pleasant with lots of space for sleeping, bathing, and storing our stuff.  The nurses are absolutely wonderful.  We expect to be here for several more days.

Davis is really enjoying his E-cards!  I know, how much can a baby really enjoy them, right?  But he looks at each one as we read the message to him.  Keep 'em coming!  Room 7739.

Let's hope and pray for a peaceful night for Little D and a productive, feel-good day tomorrow.  The worst is behind us, it should be all uphill from here.  And if not, we'll take it as it comes and plunge right through it!  This dude can handle anything - he has got to be the world's most patient patient.  I am truly blessed to have this amazing human being in my world.

Day 5 - updates

We have good news and bad news. I never know whether to start with the good or bad. Let's start with the bad so we can end on a good note.

An ultrasound of Davis's throat showed he had a clot in his jugular vein which held his central line for several days. This means he will have to start blood thinning medicine via two daily injections. I will be taught how to administer the injections because he will be sent home with it. We will have to take him to the doctor regularly until the clot disappears. :( This is upsetting because it's just one more thing to worry about. Blood clot formation is very common with his situation though, and the doctors are not too concerned.

The good news is I got to hold my buddy! We cuddled and rocked, and I fed him some milk. He's so skinny compared to his size pre-surgery, but I have no doubt he'll gain weight quickly, especially now that his little heart is fixed.
 

Me and My Buddy

Day 5 - Extubation!

Progress, progress, progress!!!!

Davis had his breathing tube taken out this morning!  This is a huge milestone in his recovery.  He is still on a little bit of oxygen.  He got to sit up this morning, and he has been awake quite a bit.  He is off several medications, and one by one they will not be needed.  He still has the chest tubes in, and those will probably come off tomorrow.  Here in a little while, Davis will be offered a bottle of breast milk - knowing Davis, I have a feeling he will do quite well.  If so, his feeding tube will come out.  We will be moving to the regular pediatric floor either tonight or tomorrow if everything goes well!

Such a cute little trooper

I am overwhelmingly pleased with his progress in the last 48 hours; those first 48 hours were rough!  I will admit that, in a way, having him awake is almost tougher on me as his mama because he is so pitiful and aware enough to know he just wants his mommy!  He is making some sounds now, little whimpers and coughs, and his eyes are wide open now at times; in those big brown eyes I see fear and discomfort. :(  He has begun to cry several times as I've tried to soothe him; I know he just wants to be picked up.  I may get to hold him this afternoon; if not today, then for sure tomorrow.

So now the hope is for his recovery to continue as quickly and easily as it has the last day or so, that he continues to receive good care from his nurses (we've had a few issues in the last 24 hours), and that he does not have to suffer too much mentally or physically.

We just love Davis SOOOOOOOOOOOOOOOOO much, and he may just be the most well-loved boy I know.  The support from our family, friends, and people we don't even know has just been AMAZING!  We received more E-cards today and read each one to Davis.  They are so cute and fun to receive, and I'll be saving them for Davis to keep and read one day so that he'll know how much people cared about him and what a trooper he was.

Peace Baby!

Day 4

Davis is making progress, slowly but surely!  We have a few tiny setbacks, which is much better than the larger setbacks we were having the first couple of days.  He is still in the PCCU but moved from a critical care room to a room in which he shares a nurse with another patient.  This room is more comfortable for me and Matt - we have a pull out couch, bathroom with shower (tiny, but we'll take what we can get!), and lots of windows.  His room number is 5744.

We thought we were going to be able to get Davis off the ventilator today.  He doesn't need the ventilator anymore - they have taken his levels down and he is breathing over it on his own.  However, he has swelling in his throat around the breathing tube.  This swelling, along with the fact that he has low muscle tone caused by his Down Syndrome, is a concern because we need that airway to be good and open once the tube comes out.  So he will keep it in today and through the night, which means they will still have to keep him quite comfortable and fairly sedated.  They will put a feeding tube in this evening and give him some of the milk I've been pumping and saving for him.

Another issue we had today was with his fluid.  One of his chest tubes was clogged, and an x-ray found a pocket of fluid.  Once the tube unplugged, he began draining just fine.  The catheter is out, and he is making plenty of wet diapers!  His skin is very sensitive right now from all the stretching and swelling.  He had a bandaid over a little hole made for his pacer wires, and when the nurse removed it, his skin came off!  He has lots of irritated skin all over his body right now, poor thing.  I can't wait to get that body home and rub lotion all over it!

Davis has no fever!!!  He is restful but also more alert when he is awake.  He is enjoying a homemade mobile I made for him with his favorite toys hung from a bed lamp.  An order has been put in for music therapy!  He loves music and I am excited to see how he does with this.

I believe each day we will see greater and greater improvements from here on out.  Maybe tomorrow I'll even get to hold my baby!!!!!!

And one thing his fan club (ha ha) may be wondering about:  we received his E-cards!  We haven't looked at them yet but will here in a few minutes.  I can't wait to see them!  Thank you so much!

Day 3

We are more than 48 hours post-op now.  Davis had a good night last night.  He was given some medicine for agitation and slept peacefully through the night.  He was taken off some medicine that was helping keep his blood pressure up and did great for several hours!  However, this morning his blood pressure dropped again; also, his urine output wasn't ideal and his creatinine level was up.  This means his kidneys are having some trouble, which can happen after being on bypass.

Davis's medicines

He was put back on the medicine to keep up his blood pressure which will in turn supply more blood to the kidneys.  The kidneys need this blood to help get rid of the fluid build-up in his little body.  He is on two medicines now which also help to push out this fluid.  He is very puffy, and we are ready to see that swelling go down.  He has started to produce more urine in the last couple of hours, and this is good news - we need that to continue throughout the day.  We can't begin to wean him off the ventilator until he gets rid of some of this fluid, because his lungs and heart will need more of his energy when off the ventilator, and we currently need all his energy to go toward keeping up his blood pressure and pushing out fluids.

All the machinery

Davis goes through periods in which he is awake, but he is not fully aware even during his wakeful times.  He responds to touch and the sound of my voice and occasionally opens his eyes a little.  He needs his pain meds and medication to keep him calm in order to keep him restful as much as possible, but because he is off the paralytic, he does move around some.  He is keeping his temperature down on his own (still low grade fever) and his heart rate is steadying at an ideal pace.

As long as he keeps up the urine output and the blood pressure, he may start weaning off the ventilator through the night and tomorrow unless another issue appears.  His surgeon feels he has turned a corner, but there are still lots of critical issues and concerns.  We want him off the ventilator as soon as possible, not only to see how he does on his own but for his comfort during his awake periods.  Plus once he is off the ventilator, I imagine he will be able to start eating some.

Living in the PICU day after day watching your baby suffer and not being able to help him is not a pleasant experience.  We were expecting a quicker recovery due to his absence of risk factors, but his complications are nothing too far out of the norm for this type of surgery and so far very treatable.  We have to be patient and wait for his little body to heal itself.  We are not moping around, focusing on the difficulty of the situation, though we are saddened when he has a setback.  We have been able to keep our positivity and strength, which we are able to do since we have each other, our family, and our friends who are helping us through it; and we still have our sweet baby with us.

Sweet baby boy.  :(

Davis has a long road of recovery ahead of him.  I daydream of holding him, rocking him, feeding him, playing with him, and, probably most of all, seeing him smile.  He is such a sweetheart and such a trooper.  The nurses think he is so cute and sweet. ;) And they don't even know the real Davis!

Davis will be in the PCICU for a few more days.  His daytime nurse he has had the last three days is off for the next four, and we've been joking that we hope we don't see her again.  Hopefully by that time we will be moved to the regular pediatric floor.  Not only will this mean that Davis is much better, but the accommodations for me and Matt will be much more comfortable.

I know Davis has a lot of fans and followers, and I will continue to update daily and/or when anything major changes.

Last 24 hours

Davis has been out of surgery just over 24 hours now.  Immediately after surgery, he was doing quite well and we expected the best.  He began to wake up yesterday evening, which just broke my heart.  He was not comfortable and did not like the tube down his throat.  He cried little tears with no sound.  It was definitely a moment I wish I could forget.

Then things started going downhill; his temperature began to rise, his heart was beating at times slowly and at times too fast, his blood pressure plummeted, and there was a possibility of pulmonary hypertension.  The decision was made to give him medicine to keep him asleep and keep him still, on top of all the other medicines needed to assist his pain, blood pressure, etc...  He also started a nitric oxide treatment.  A pacer was necessary to keep his heart in rhythm.  He was monitored very closely through the night.

In the morning, the doctors discovered that he had a pocket of fluid on the right side of the body that was not draining; an echocardiogram was performed to double check the condition of the heart, which was found to still be in good shape.  Another chest tube was inserted to drain the extra fluid.  Once the fluid began to drain, he began to improve rather quickly.  He soon came off the pacer and hasn't had to be put back on it.  This is a very good sign!  His temperature is also much lower and his white blood cell count is normal.

The tricky part now is to keep his blood pressure stable while eventually getting him off the ventilator.  Over the next day or two, medicines will be adjusted to work on these goals.  He is beginning to wake up some, very slowly, and we will see how he does.  It is basically just wait and see at this point while assisting him with moving in the direction of his little body working more on its own.

Davis is in good hands.  The staff is very knowledgeable and kind - they are very gifted, and I'm so thankful for them.  Davis is a tough little guy!  He has been through so much and has a long road of recovery ahead.  I keep hearing that I'll be amazed at how quickly he will recover, and I hope that is the case.

We are hanging in there okay - we are tired, but it's hard to rest when you are this worried.  I literally thought at times last night and this morning about the worst case scenarios.  Seeing him make these little improvements really eases our minds.  I should know better than to doubt my little fighter!

I gotta go hold my little guy's hand now since he is starting to become more aware.  He needs his mommy!  And we need you guys - it's so comforting to hear your words of encouragement.  Thank you for all the thoughts and prayers.

Critical Concerns

Over the last 2 or 3 hours, Davis has developed a fever that is most likely a result of having had surgery, not an infection. The fever is making his heart rate high. Also, his blood pressure is a little low. He is uncomfortable and trying to pull at his breathing tube. So it's going to be a long night for him. He needs his rest but they can't sedate him too heavily in order to monitor his breathing progress. They are working on cooling him off and keeping his blood pressure up. He's a pitiful little guy right now. Needing some more strength and peace to get through this. :(

Surgery Update - Part 3

I got to see my sweet baby!!!  He is doing really well considering all he has been through today.  In this picture, it looks like he is awake; but don't worry, he is very much asleep.  He is on plenty of meds to keep him comfortable.  He is on a ventilator and the nurses will work with him through the night with a goal of taking him off the ventilator in the morning.  There are lots of tubes putting fluid in and taking fluid out - the nurses patiently explained all the devices and the monitors for us.  We are holding up quite well.  I know he is in good hands.  I am just happy to be able to see him and touch him whenever I want.  We plan on sleeping in the unit with hopes of getting a parent room in order to get a good night's sleep while Davis is still fully sedated.

I hope this picture doesn't bother you or make you sad.  Davis needed this surgery, and he is strong.  The scar will be a reminder of strength and courage.  This will be my last post of the day but I will fill you all in tomorrow with his progress.  Thank you all for helping us get through the day.

Peace baby.

Surgery Update - Part 2 (and card instructions)

We spoke with the surgeon after she completed the operation; she said all went well!  The nurses are getting Davis set up in his room now.  We will be able to see him very soon!

His room number in the PCCU is 5304.

If you would like to send him an E-card, go to ChildrensHospital.Vanderbilt.org and click "send an E-card."  Enter the room number, and volunteers will deliver the card.

To send mail:
Davis Reeves
Room #5304
Monroe Carell Jr. Children's Hospital at Vanderbilt
2200 Children's Way
Nashville, TN  37232

We still have a long road ahead of us; I will continue to update.

I CAN'T WAIT TO SEE HIM!

Surgery Update

In the holding room waiting to go back to the operating room.  Such a trooper!

Surgery day has gone rather smoothly thus far.  We all managed to get some sleep last night - not as much as usual but enough to function.  Davis did very well coping with not having breakfast.  I got lots of cuddle time with him in between admission and leaving him with the nurses.

All the grandparents are here and so is Aunt Kelli.  Several other family members and friends have been by to see us.  Matt and I are doing just fine - we have plenty going on to keep us distracted.

We've received regular updates throughout the surgery.  As of the last update, the repair had been made and confirmed accurate by an echo.  They are working toward getting him closed, but this will take at least another hour.  Then it will be probably another couple of hours to make sure he is stable and get him set up in his intensive care room.

I'll do my best to update this evening with his progress.  I believe all your prayers are working, and we thank you!  I have enjoyed reading your texts and facebook comments.  I made sure to show Matt all the love you guys are sending our way.

I miss my buddy!

Pre-Op Day

Oh wow, what a day.  We spent eight and a half hours at Vanderbilt Children's Hospital today.  It was a looooooooong day... but Davis is such a trooper.  I was so worried about him being hungry and uncomfortable before his sedated echo, but he was as happy as can be!  He did great during the procedure and woke up happy.  Then we had an x-ray followed by a physical involving urine analysis, blood work, and EKG.  We met with a cardiologist, anesthesiologist, surgeon, and child life specialist.  Fitting feedings and naps into the schedule was near impossible, but we did it.

Davis getting ready for his echocardiogram

Sleepy buddy after echo

However, I discovered my breaking point.  I was attempting to be a strong mommy today!  We were shown pictures of children after their surgeries and told about all the details and risks involved with this type of surgery...and I put on my happy face and thought to myself many times "I can do this."  Besides, it's not me that has to endure the brunt of the hardship, it's my baby.  While I feel the pain emotionally, he feels it physically.  It's a good thing he's blessed with such a calm, strong demeanor like his Daddy.

Getting ready for EKG - it looks like I'm praying over him but I'm singing "You Are My Sunshine;" he was very tired at this point and needed a distraction to get through it - it worked!

For whatever reason, they saved labs for the end of the day.  My poor child was so physically tired and did not want to be poked and prodded at anymore!  The sweet nurses had trouble finding blood-worthy veins.  After unsuccessfully trying a vein on his head, a nurse finally believed she was able to get the one in the fold of his arm.  We had to hold him down (for awhile!); singing, stroking, etc... was not calming him down - and I just lost it.  And it just so happened that during this moment, a fire drill was occurring.  So Davis is crying, I'm crying, the sirens are blaring, Matt is trying to calm us both down, the nurses are being as patient as they can be (they did a good job by the way).  The moment was so surreal it was almost as if it wasn't actually happening.  I am sure I'm in for lots more moments just like it over the next few days.

Napping in stroller waiting to meet the surgeon - so cute!

But altogether, we are holding up well!  Davis ate a good dinner; he's napping now.  He'll have all the milk and cereal he wants tonight, for it will be awhile 'til he will be able to eat again.  I will give him a special bath tonight with special soap to get him extra clean for his big morning.

Surgery will begin around 8:00 a.m. central time and will last approximately five hours, depending upon several factors.  The tricky part of the surgery involves the surgeon basically having to make two valves out of one.  So she has to get them perfect, not too tight and not too leaky.  But this is HER surgery, from what I'm told.  We are in good hands, and Davis doesn't have any risk factors for complications.  Nevertheless, there are always risks.  But I'm trying to tell myself that in life, there are always risks...it doesn't meant we don't take them.  You have to take risks in order to live your life!  And in Davis's case, this is especially true.

After the surgery, the nurses will take a couple hours to get him settled; then we'll be able to see our special guy.  He will be fully sedated when we see him, and I believe we are prepared for what the moment will be like;  that doesn't mean it will be easy.  We saw him hooked to a bunch of machines in the NICU after he was born; this will be more involved, and he will be on a ventilator.  Depending on how he is doing, he will slowly move off sedation and machinery.  I may even get to hold my sweet thing by Monday!

I'm already sleep deprived and not really planning on getting much sleep tonight.  It's a good thing I've got my rock (Matt) to help me through it.  I'll update you guys as much as I can throughout the following days.  I can't tell you how much I appreciate the thoughts and prayers.

And again, I just have to say it, Peace Baby!

Road Trip

Well, we made it to Nashville!  Little Davis has been in an excellent mood all day and full of smiles.  He is an easygoing traveler, loving the car ride and sleeping pretty much anywhere, which makes the pre-pre-op day easier on mom and dad.

The Ronald McDonald House here at Vanderbilt is full tonight, but Davis Sr. (my dad) used his hotel points and booked us a sweet suite (ha ha).  So for the next two nights, we have a living room, full-size kitchen, big bathroom, and bedroom with a king bed.  These amenities will make things much easier on us.  However, I recently realized I left the freezer bag to keep Davis's breast milk cold tomorrow in my parents' freezer; so all we have is this rather sizable cooler to tote a couple of bottles in all day tomorrow, along with his food, utensils, breast pump, diapers, bibs, clothes, and all the other necessary baby accessories you need to get through a day...looks like we may have to make a run to the store for something a bit more efficient.

Tomorrow we will be at Children's Hospital for much of the day.  I will wake Davis at 4:30 a.m. for a bottle; hopefully he will go back to a peaceful sleep for a few hours.  We are due at the hospital at 9:00 for a sedated echocardiogram.  He will also have a EKG and x-ray.  We will meet with Dr. Christian in the afternoon to discuss surgery details.

As of right now, all we know about surgery day (Friday) is we have to be at the hospital at 6:30 a.m.  This will make for a very early morning for us, as we'll have to pack up all our things and check out of the hotel.  At least we are accustomed to the Eastern time zone so that it won't feel quite as early.  We will be able to stay overnight in the hospital but will also be able to keep trying for a room at the Ronald McDonald House.

I want to thank everybody that has expressed your concern for us; I like to hear your sweet, uplifting words.  We know we have a plethora of people thinking, praying, sending good vibes, whatever it is that you do, and I just want to express how deeply I appreciate all the love and encouragement.

I forgot to take pictures today!!!  So no cuteness to share tonight, but I'll be sure to get some tomorrow.  My understanding is we won't be allowed to take video during our hospital stay but can take all the pictures we want.  So there will be cuteness to come, I promise.

Matt has managed to stay awake as I've typed this in order to get in bed together with our sweet angel resting next to us in his portable crib.  So I better go so that we can try to rest as much as we can while we can; I'll update tomorrow evening with surgery day details.

Peace Baby!