Tuesday, March 29, 2011

Going Home!

Yesterday we finally made it home.  :)  It was a long day of hanging out in the hospital room, waiting for all the discharge steps to be checked off, home care items to be delivered, etc.  Eventually we got the portable oxygen tank, feeding tube pump/supplies, received our training on everything and then got the ok to leave the hospital around 4pm.  So we loaded up one of the famous Children's Hospital red wagons with all our stuff, and made a b-line for the exit.  All went well on the ride home with Davis sleeping the whole way in his cozy car seat.  Then we came inside and introduced Davis to Ella, who promptly sniffed him and then kissed his head.  It was great to see that she accepted him and was happy to have a little brother.  Last night was a little rough as I think Davis was getting used to his new home and wanted to be held all night.  But after a few good feeds, he finally calmed down and fell asleep for several hours.  We're definitely a bit sleep deprived today, but still super excited to have the little guy at home.  Today was pretty mellow, just spending the day around home and getting used to the new routine.  Diana held Davis for a while allowing me to get out to the grocery store and take care of re-stocking the fridge since we haven't been here for weeks except to sleep.  I also caught up on laundry and last minute baby stuff so the house is finally feeling comfortable and ready for our new life to begin.



Sunday, March 27, 2011

Davis...master of the car seat challenge

Davis had the task of passing the "Car Seat Challenge" today.  He had to sit in his car seat for 1.5 hours, all locked in, while the nurse monitored his vitals every 10 minutes to be sure he was breathing well and getting enough oxygen while in that position.  In typical Davis style, he passed with flying colors and actually slept through the entire test.  WAY TO GO DAVIS!!!  So we can check off yet another goal towards going home.  The doctors have also officially signed off on discharging us tomorrow, so we're on our way.  We've been telling Davis all about home, his awesome dog Ella, and all the fun clothes that he has to look forward to.  After living in a diaper and swaddle wrap for the first 17 days of his life, I think he'll appreciate the coziness of clothes.  We'll be taking the feeding tube and oxygen with us, but don't foresee needing either for too much longer.  And, the grandmas made a fun discovery today that Davis has a dimple on each cheek!  Kelly and I each have one dimple, on opposite cheeks, so I guess we each gave ours to him.  :)  What a cutie. 
Master of the car seat challenge

Quality time with the uncles

Davis is still working on ramping up his feeding times, but seems to waiver on how long he can perform. Babies with heart problems tend to use more energy for breathing/heart function, so feeding really wears him out sometimes. The nurse said that eating for him is equivalent to us going for a run...a big workout.  But in general he's making progress and has gained a little weight as of this morning, so we're feeling great about that.  Yesterday we had lots of visitors and both uncles (Zach and Jason) plus aunt Katie and grandma Kotas were able to hold Davis and spend some quality time with us.  Diana is still here and helping to keep Davis happy.  At this point, we're working on reading all the educational reading material and watching the safety videos that are required before discharge.  Today we will put Davis through the car seat challenge.  This is where he has to sit in the car seat for an hour while being monitored so they can be sure he is getting enough oxygen and breathing ok while sitting in that position over time.  There is still lots of talk about tomorrow being the day we get to go home, so we're pretty excited that today may be the last full day at the hospital and tomorrow night we may ALL be sleeping at home.  :)  Fingers are crossed.

being burped

Jason and Davis hanging out
Zach and Davis getting to know each other

Dad...you're crazy!

Aunt Katie and Davis

Friday, March 25, 2011

No Guts No Glory

It has been a relatively uneventful day today which for most of us might seem rather boring but for Davis is a good thing.  Its mainly been long naps followed by lots of eating followed by long naps once again.  The only excitement of the day was when the nurse taught Dad how to remove and place a new feeding tube through Davis' nose. There is a slight chance he will have to go home with the tube so someone had to show they could successfully insert a new tube and make sure it's in the right place.  That someone was not going to be Mom.  So after Dad was the bad guy Mom swept in and consoled her little guy as she does best.  The nurse told us it's not painful for Davis and only tickles the back of his throat and it might make his gag reflex respond slightly on the way down.  I'm not sure if Davis agrees with the nurse on this one, the amount of crying that ensued was not comparable to 'a tickle in his throat.'  But it needed to be done and it gets us one step closer to going home.  Speaking of the h-o-m-e word the doctors told us that they think they will be able to discharge us on Monday morning assuming all goes well through the weekend!!!  Nice work Davis, you and Dad stepped it up today bigtime...'no guts no glory' that's what Davis always says.

Thursday, March 24, 2011

Grandma is here!

Davis had a fairly uneventful day today, continuing to work on his feeding and getting lots of rest.  The big highlight of today was the arrival of Grandma Grimsley.  We had been telling him about how she was on her way and how he would get lots of love and cuddles from her very soon.  Diana arrived this afternoon and has had Davis in her arms for a few hours now, and I think the bonding has officially begun.  :)  He sure does seem happy in her arms.  They spent a while staring at each other and talking, and then he fell into a deep contented sleep.  Grandmas are the best.

Diana and Davis getting to know each other

Wednesday, March 23, 2011

Perfecting his Stroke

Davis has been training all day long at 'boob' camp.  Our lil' soldier is working hard to perfect his stroke and improve his feeding endurance. Each day he seems to be able to double what he could do the previous day. He has been spending his free time taking long naps and staring at anything that is within 2 feet from his face. He is anxious to see Grandma Grimsley who will be flying in tomorrow to spend the week.  The doctors seem continually happy with how he's doing and made the first mention of going home today.  We're trying not to get too excited yet, but they said maybe this weekend if all is going well.  Go Davis Go!


Tuesday, March 22, 2011

A new home

After working diligently on feeding today in the CICU area, we were finally told that a room on the 9th floor had opened up and we were the lucky winners!  So Davis and I just moved up and are enjoying the new room.  He is being a real champ today and is increasing the time he takes milk by mouth every time we feed.  He still gets pretty tired after about 15 min or so, but each time is a workout to make him stronger.  The docs/nurses/feeding specialists are all very impressed by his progress.  :)  So we'll continue working on longer and longer feeds and hopefully cut out the feeding tube feeds completely before we go home. (small yellow tube going into his nose and down to his stomach)  Still no telling how long this will take, but we're getting closer every day.  In the meantime, there is a lot of bonding and cuddling going on.  Our new room is much more private and we now have our own bathroom, TV, HUGE crib for Davis, sleeper couch, and a door!  We were in an open bay area in the CICU, so this is a huge improvement.  I'm a little sad to say goodbye to the amazing doctors, nurses and staff that took such good care of us in the CICU, but am very excited to be on our way to taking Davis home.  Let the countdown begin!



Monday, March 21, 2011

Well rested and ready to grow

Davis has been busy working on his feeding today, but I think he's really liking this part of his journey.  Since filling his belly with breast milk, Davis has become the most well behaved baby ever.  He's still on a continuous feed through his feeding tube, but we're stopping that every few hours, for an hour, and then trying to feed him with the bottle to monitor the volume he's getting.  He has made continual progress, starting out at 5ml, then taking 10ml, and just now took 14ml.  So he's getting there.  After feeding he instantly falls to sleep and looks amazingly content.  :)  Then they put the rest of the milk back onto his continuous feed setup which keeps him very happy and sleepy. I also helped the nurse give him a bath today, which he wasn't very fond of, but now he smells delicious and is sleeping off his milk stupor in grandma's arms.  Bliss. We've also been officially released to move to the recovery floor where people go before going home.  But there are no open rooms right now, so we'll stay in the CICU for now, continuing to work on his feeding until a room opens up or we get to go home.  No word on how long that will take yet...we're leaving that up to Davis. 

Sunday, March 20, 2011

No more rumble in Davis's tummy

Davis had another good/uneventful night.  :)  Rounds today were also very positive and the doctors all think he's continuing to make great progress and finally made the first mention of him being close to leaving the CICU area. This means we'll move up to the 9th floor where we'll stay to perfect his feeding and get comfortable with taking him home.  For today, the plan has been to continually decrease his oxygen levels and pull his transpyloric feeding tube (bypasses his stomach and feeds his intestine) back so he gets food into his stomach now.  This has all gone well so far.  He is doing really well with the lower O2 levels, and he seems to be happily in a food coma right now, sleeping soundly.  It has to feel good to finally have some food in his belly after 10 days of life!  We started off with a bottle because they want to see how much volume he's able to take by mouth, then they switched to his feeding tube again after he ate about 5ml on his own.  Not too bad for his first shot! But he certainly seems strong enough to feed, he just needs to get the process down.  After having the ventilator tube in for so long, it can take a little while to get the hang of that sucking instinct again.  But Davis is very happy today, and we're continuing to take turns holding him, which he loves.  He's also proving to be very strong and independent already.  He likes to hold onto his own pacifier, and even held in his oxygen canula for a while yesterday.  He also likes to make faces and has been keeping us highly entertained.  Now the goal is to get him upstairs and then home asap...so we'll just keep rooting him on as he does all the tough work that will get him home.

Taking his first milk by mouth


Being super independent and holding his own pacifier

Saturday, March 19, 2011

A 'Quiet' Saturday

It has been a quiet afternoon in the CICU with the exception of Davis.  He had to hold off on making sounds for his first seven days so he's now playing catch up.  Dad spent a mostly sleepless night with him trying to calm him down.  His feeding tube bypasses his stomach so he doesn't ever have that full belly feeling even though he is getting plenty of milk.  It also doesn't give his stomach much to do except give him some acid reflux.  So this combination keeps him on the fussy side of things.  Afternoons seem to be his quietest time so he is resting soundly in Mom's arms as I type.  A big plus of getting him off the ventilator is that we now have free reign over taking him on and off of his bed to be held.  Grandma and Grandpa got their first chance to hold him today, we didn't think we'd ever get him out of Grandma's arms but were able to pry him away to get some food in our bellies.  I can't blame her, he's tough to put down especially after having waited over a week to hold him.  He has really taken to the pacifier which is a great sign since some kids can have an oral aversion after being on breathing tubes.  He seems much happier to be spending time being held than in his small hospital bed, who could blame him.  The only plan for him today was to begin reducing his oxygen levels and let him show us what he can do.  So far so good!!

Some quiet time before going to 'sleep'

Grandma's (Nana) first go with him

He was crying most of the time we were gone for lunch, this is how we found him upon return.

Friday, March 18, 2011

Happiness is being held

Davis was pretty agitated with the cpap mask on his nose and was doing A LOT of squirming and pulling at the mask.  They had to re-situate the setup 2 times and then our awesome nurse had a better plan.  They pulled the mask off and put in a standard O2 nose setup, then put him in our arms to lay upright with mom/dad contact.  This immediately calmed him down and he's been now sleeping for several hours.  Kelly and I have been taking turns holding him, which is so much easier now that the ventilator tubes are gone.  The poor little guy just wanted to have that stupid mask off.  And then mom and dad time put him right to sleep.  They have checked his blood gas levels twice since extubation and all looks fine except a slightly high CO2 level.  But we're trying to keep the pacifier in to help that level go back down.  So far so good.

Look how cute i am now...no more tape mustache!



Big day for a little guy

Davis continued to do very well on his support trials last night and his levels were all looking good this morning.  So the doctors decided to pull his breathing tube at 11am.  He tolerated the extubation as well as can be expected and is now being soothed by Kelly and trying to get some sleep.  Everything is looking very positive so far...what a relief.  They'll start his feedings again in a few hours if everything continues to look this good and he'll then be on the road to freedom.  :)  His chest x-ray this morning also showed that he's making steady progress on the size of his heart (it's about the same as before, but will continue to look smaller as his chest grows).  And they're 99% sure his duct is now closed and will verify this with another echo scan in the near future, which means that there is good blood flow/pressure moving through his pulmonary artery.  Great news, as this means he can avoid the initial shunt surgery we thought he would need.  Davis is a rock star.

The brief moment between ventilator tube coming out and cpap going in.  YEAH, we can see his face!

Thursday, March 17, 2011

Happy one week birthday for Davis

Today has been fairly uneventful, but in the CICU world that is a great thing.  We started off the day by learning that he had done well on his support trials, and that he slept well through the night.  The plan for today was to continue the support trials throughout the day in 2 hour intervals, and ramp up the feedings through the day.  They decided not to extubate today so he'd have another day to exercise his lungs and get more nourishment in the hopes that they can extubate tomorrow with good results.  The last thing we want is to have to re-intubate again as this is very traumatic for him and us and is a definite setback in his progress.  It usually takes a full day for him to recover from something like that and get his levels back to normal.  So we're keeping our fingers crossed that he's prepared and ready for breathing on his own tomorrow.  Also, the 48 hour cultures they were growing all came back negative for infection/bacteria.  So he's officially off the antibiotics and in the clear on that front. This afternoon Kelly was able to hold Davis for a while and seemed to love the bonding time...as did Davis.  Grandma and Grandpa Kotas are also here this afternoon soaking up their Davis time as well.  He's getting lots of love today.  :)   This is also his one week birthday as of 6:05 MST, so we sang to him while he slept like a log.  Tomorrow could be a big day for him, so we're hoping he continues to do well on his support trials, get some good sleep and prepare himself for a bit more independence in the morning.
Tiny feet with his name/ID tag, blood pressure cuff and blood oxygen sensor taped to his foot.


Wednesday, March 16, 2011

Family Photos


Constant Improvement

Davis is a trooper. He's had a good day and is continuing to rest nicely.  The docs came by for their rounds this afternoon and had great things to say about Davis' progress to date.  Although he failed his first extubation the other day, they're continuing to taper him off the ventilator again and are planning to try to extubate again tomorrow or the following day if all goes well with his trials (where they turn off the vent for a few hours and see how he does).  So we're hoping this works out so we can once again hear his raspy voice and see much more of his face.  Plus, it's so much easier to hold him and move him around when he's not hooked up to all the breathing tubes which are cumbersome and stiff.  His heart is continuing to shrink since they admitted him on the 10th, due to a reduction in all the extra fluid, and the medications they now have him on.  They said it's a result of finally figuring him out and leveling everything back to a relative normal level.  So every bit of heart shrinkage is allowing more and more lung room, which is also going to improve his breathing without the ventilator.  All good progress.  As far as his fever goes, his temp is back down to a good safe range where they're no longer concerned.  And they are not seeing any infection or growth on the cultures they're watching from multiple areas (blood, urine, stool, IV line etc), so we think that the fever/infection scare is now over.   If all continues to look good tomorrow afternoon (48 hrs later), they will take him back off the antibiotics.  The final thing they are watching is the slow closure of the duct in his heart.  Duct explained here.   We're all born with a small duct that closes after birth to allow for increased pulmonary blood flow.  Check out the link to learn more about this. But basically, once this duct closes, they're hoping his heart continues to perform as well as it is now (blood oxygen levels stay high).  If its performance declines once the duct closes, they may need to intervene by performing the shunt surgery.  But this duct is already showing signs of closure and he's continuing to do really well so everyone is hopeful that this will go smoothly.  The other concern is that this duct will never close, which would require them to run a line into his heart and basically blow up a balloon that would simulate the closure so they could see how this changes the heart function and blood oxygen levels.  So that's what's going on here today, lots of good news and more waiting.  Overall Davis seems content and looks great lately.  My dad and I are hanging out together watching over him and keeping him company today and my mom and Kelly are on their way after work.  This guy has a lot of family that loves him and I'm hoping he is getting that message by all the kissing, skin to skin time and talking to that he's getting from everyone.  :)

X-ray on the left is from the day he was born.  His entire chest was filled with his heart.  You can see a little black outline on the left side where his lungs were stuffed, but the rest is heart.  The darker area at the bottom right is air in his stomach/intestine. The right side is his chest as of this morning.  The heart (white oval) is still larger than normal, but you can see obvious progress (shrinkage).  The darker area around the heart is all lungs now.  :)

Davis, Grandpa and the giraffe spending quality time together.

Constant Improvement

Davis is a trooper. He's had a good day and is continuing to rest nicely.  The docs came by for their rounds this afternoon and had great things to say about Davis' progress to date.  Although he failed his first extubation the other day, they're continuing to taper him off the ventilator again and are planning to try to extubate again tomorrow or the following day if all goes well with his trials (where they turn off the vent for a few hours and see how he does).  So we're hoping this works out so we can once again hear his raspy voice and see much more of his face.  Plus, it's so much easier to hold him and move him around when he's not hooked up to all the breathing tubes which are cumbersome and stiff.  His heart is continuing to shrink since they admitted him on the 10th, due to a reduction in all the extra fluid, and the medications they now have him on.  They said it's a result of finally figuring him out and leveling everything back to a relative normal level.  So every bit of heart shrinkage is allowing more and more lung room, which is also going to improve his breathing without the ventilator.  All good progress.  As far as his fever goes, his temp is back down to a good safe range where they're no longer concerned.  And they are not seeing any infection or growth on the cultures they're watching from multiple areas (blood, urine, stool, IV line etc), so we think that the fever/infection scare is now over.   If all continues to look good tomorrow afternoon (48 hrs later), they will take him back off the antibiotics.  The final thing they are watching is the slow closure of the duct in his heart.  Duct explained here.   We're all born with a small duct that closes after birth to allow for increased pulmonary blood flow.  Check out the link to learn more about this. But basically, once this duct closes, they're hoping his heart continues to perform as well as it is now (blood oxygen levels stay high).  If its performance declines once the duct closes, they may need to intervene by performing the shunt surgery.  But this duct is already showing signs of closure and he's continuing to do really well so everyone is hopeful that this will go smoothly.  The other concern is that this duct will never close, which would require them to run a line into his heart and basically blow up a balloon that would simulate the closure so they could see how this changes the heart function and blood oxygen levels.  So that's what's going on here today, lots of good news and more waiting.  Overall Davis seems content and looks great lately.  My dad and I are hanging out together watching over him and keeping him company today and my mom and Kelly are on their way after work.  This guy has a lot of family that loves him and I'm hoping he is getting that message by all the kissing, skin to skin time and talking to that he's getting from everyone.  :)

X-ray on the left is from the day he was born.  His entire chest was filled with his heart.  You can see a little black outline on the left side where his lungs were stuffed, but the rest is heart.  The darker area at the bottom right is air in his stomach/intestine. The right side is his chest as of this morning.  The heart (white oval) is still larger than normal, but you can see obvious progress (shrinkage).  The darker area around the heart is all lungs now.  :)

Davis, Grandpa and the giraffe spending quality time together.

Tuesday, March 15, 2011

Well rested and ready for what tomorrow holds

After an exciting night Davis spent the whole day sleeping things off. He is running a little fever so he's been put on antibiotics as a precaution until all of the lab work comes back.  They have already begun reducing his ventilator support again in hopes to remove the breathing tube again in the next few days.  He's taken a few punches but he's back up and ready to take on whatever tomorrow may hold. 

Well rested and ready for what tomorrow holds

After an exciting night Davis spent the whole day sleeping things off. He is running a little fever so he's been put on antibiotics as a precaution until all of the lab work comes back.  They have already begun reducing his ventilator support again in hopes to remove the breathing tube again in the next few days.  He's taken a few punches but he's back up and ready to take on whatever tomorrow may hold. 

Davis had a different plan

Apparently Davis had a plan of his own and didn't want to follow the good doctor's advice.  He had to be intubated again last night and is now back on the ventilator. Once they had him breathing on his own yesterday they closely monitored the gas levels in his blood.  His oxygen levels were looking good but his carbon dioxide levels steadily increased. This increase can cause issues in the bloods ability to effectively deliver nutrients to tissues throughout the body (perfusion).  So after about 7 hours of being on his own he is back on the ventilator and is resting soundly. The doctors were somewhat surprised since he had been doing so well after multiple tests off of ventilation.  However, this is not a major setback; he just showed us he wasn't quite ready to do it himself.  Later today they will begin tests again off of ventilation and we'll try to pull the tube again in a few days if Davis performs well.  This will give him a little more exercise for those lungs to strengthen.  The good news of the morning was his billirubin levels are low enough to remove him from the lights.  So now snuggles and kisses with Mom and Dad will be much easier. 

Davis had a different plan

Apparently Davis had a plan of his own and didn't want to follow the good doctor's advice.  He had to be intubated again last night and is now back on the ventilator. Once they had him breathing on his own yesterday they closely monitored the gas levels in his blood.  His oxygen levels were looking good but his carbon dioxide levels steadily increased. This increase can cause issues in the bloods ability to effectively deliver nutrients to tissues throughout the body (perfusion).  So after about 7 hours of being on his own he is back on the ventilator and is resting soundly. The doctors were somewhat surprised since he had been doing so well after multiple tests off of ventilation.  However, this is not a major setback; he just showed us he wasn't quite ready to do it himself.  Later today they will begin tests again off of ventilation and we'll try to pull the tube again in a few days if Davis performs well.  This will give him a little more exercise for those lungs to strengthen.  The good news of the morning was his billirubin levels are low enough to remove him from the lights.  So now snuggles and kisses with Mom and Dad will be much easier. 

Monday, March 14, 2011

Davis finally has a voice

Today has been a great day.  Kelly and I got here early this morning and were able to visit with Davis for a while before the doctors did their rounds.  We sit in on the discussion when they come to our area to hear how things are going and what the plan is that day for Davis.  We were pleasantly surprised to hear that he continued to improve during every breathing trial (where they turn off the ventilator and let him do all the work) they did through the night and they were planning to remove his breathing tube today.  :)  They also felt his lungs are getting stronger daily and as he grows bigger his chest should allow more space for his lungs to work, which should make his breathing better and better over time.  His bilirubin levels are still too high (causes jaundice/yellowing of the skin) but coming down slowly.  So he has to stay under the bright lights for a day or two more.  So after a nice lunch with my mom, dad and Jason we came back to see Davis and got to see them remove his breathing tube.  Now Davis has a voice, raspy and gruff right now (due to the tube that was in there for the last 4 days) but a sweet little voice.  So far he's been crying very little and seems to take all this in stride for the most part. Kelly and I are thinking this will all make him a very sound sleeper once we get him home.  He can generally sleep through all kinds of activity here, and while the staff is messing with him a great deal.  So now he only has a c-pap machine pushing air into his nose with a little oxygen added.   This makes him look a little like he's an elephant, and is made even funnier when you add in the purple shades that he needs to wear while under the bright lights.  But at least his mouth is now open and free.  The Cpap and bright lights will only be on him for a few days and then he'll be relatively free.  Of course he'll still be hooked up to some cords and IV lines for medicine to be delivered, but we're looking forward to seeing his eyes again and hearing his voice more.  I was able to hold him for an hour last night when he got approval to get our from under the lights for a while.  It was awesome and he seemed to love it as well.  It's crazy how something so simple like holding your newborn baby can be such a special treat. 
Last night while I was holding him
Davis getting his echo scan
Davis after his breathing tube was removed
Visiting after they hooked up the cpap machine and put his shades back on.  Back to the bright lights!

Davis finally has a voice

Today has been a great day.  Kelly and I got here early this morning and were able to visit with Davis for a while before the doctors did their rounds.  We sit in on the discussion when they come to our area to hear how things are going and what the plan is that day for Davis.  We were pleasantly surprised to hear that he continued to improve during every breathing trial (where they turn off the ventilator and let him do all the work) they did through the night and they were planning to remove his breathing tube today.  :)  They also felt his lungs are getting stronger daily and as he grows bigger his chest should allow more space for his lungs to work, which should make his breathing better and better over time.  His bilirubin levels are still too high (causes jaundice/yellowing of the skin) but coming down slowly.  So he has to stay under the bright lights for a day or two more.  So after a nice lunch with my mom, dad and Jason we came back to see Davis and got to see them remove his breathing tube.  Now Davis has a voice, raspy and gruff right now (due to the tube that was in there for the last 4 days) but a sweet little voice.  So far he's been crying very little and seems to take all this in stride for the most part. Kelly and I are thinking this will all make him a very sound sleeper once we get him home.  He can generally sleep through all kinds of activity here, and while the staff is messing with him a great deal.  So now he only has a c-pap machine pushing air into his nose with a little oxygen added.   This makes him look a little like he's an elephant, and is made even funnier when you add in the purple shades that he needs to wear while under the bright lights.  But at least his mouth is now open and free.  The Cpap and bright lights will only be on him for a few days and then he'll be relatively free.  Of course he'll still be hooked up to some cords and IV lines for medicine to be delivered, but we're looking forward to seeing his eyes again and hearing his voice more.  I was able to hold him for an hour last night when he got approval to get our from under the lights for a while.  It was awesome and he seemed to love it as well.  It's crazy how something so simple like holding your newborn baby can be such a special treat. 
Last night while I was holding him
Davis getting his echo scan
Davis after his breathing tube was removed
Visiting after they hooked up the cpap machine and put his shades back on.  Back to the bright lights!

Sunday, March 13, 2011

Davis is spending the day at the beach

Today started out a little rough, but everything is looking up again now.  Kelly and I got to the hospital early this morning thinking we may see his ventilator tube come out, but that didn't end up happening due to his lungs having so little space to function.  They were doing trials through the night with him to see how he would tolerate less help from the ventilator, and evidently he's not quite ready. His heart is wall to wall which only leaves a few small pockets for his lungs.  They're saying that even though there isn't much room there, his lungs could still work just fine, he just needs time to prove that he can do it.  Being premature and having a huge heart squishing the lungs in utero have all made it tough for him, but he's doing better than expected.   They've reduced the number of breaths per second that the ventilator provides from 30 on Friday to 12 now, and he's doing the rest on his own.  They plan to continue testing him by reducing the ventilator from time to time which exercises his lungs and will help them mature.  So, for now the tube stays in.  He also had his first Arrhythmia this morning which was pretty scary for Kelly and I, but very common in babies with Ebsteins.  His heart rate got up to 220 and would not go back down, so there were lots of people who came over and they hooked him up to a monitor to record the rhythms.  Eventually they gave him a drug that stopped the cycle and he calmed down shortly after that...and then got some morphine to let him truly rest for a while.  He also had a little Jaundice this morning, so he's spending the next few days under the bright lights to resolve that problem.  Here's a photo of his cool shades.

We just spoke to the docs about how he's doing and all in all they're very pleased and positive.  I'm learning that there is no easy resolve to anything in the CICU though, and this will be a long process of trial and error to get everything stable.  They need to learn more about how his body is working, what he can tolerate and how to best treat his specific issues one by one.  The staff here has been truly amazing and takes lots of time to make sure we're comfortable and understand everything that is happening.  The main cardiologist in the CICU just spent 45 min drawing us pictures and walking us through how and why these things happen and how they're treating everything.  It's very comforting to better understand all the complicated things they're discussing.  For now, Davis is sleeping soundly and Kelly and I are just hanging out to be near him.  I'm looking forward to holding him again soon, but it may have to wait till he's out from under the bright lights in a day or two.  Till then we'll be soothing him from the sidelines.

Davis is spending the day at the beach

Today started out a little rough, but everything is looking up again now.  Kelly and I got to the hospital early this morning thinking we may see his ventilator tube come out, but that didn't end up happening due to his lungs having so little space to function.  They were doing trials through the night with him to see how he would tolerate less help from the ventilator, and evidently he's not quite ready. His heart is wall to wall which only leaves a few small pockets for his lungs.  They're saying that even though there isn't much room there, his lungs could still work just fine, he just needs time to prove that he can do it.  Being premature and having a huge heart squishing the lungs in utero have all made it tough for him, but he's doing better than expected.   They've reduced the number of breaths per second that the ventilator provides from 30 on Friday to 12 now, and he's doing the rest on his own.  They plan to continue testing him by reducing the ventilator from time to time which exercises his lungs and will help them mature.  So, for now the tube stays in.  He also had his first Arrhythmia this morning which was pretty scary for Kelly and I, but very common in babies with Ebsteins.  His heart rate got up to 220 and would not go back down, so there were lots of people who came over and they hooked him up to a monitor to record the rhythms.  Eventually they gave him a drug that stopped the cycle and he calmed down shortly after that...and then got some morphine to let him truly rest for a while.  He also had a little Jaundice this morning, so he's spending the next few days under the bright lights to resolve that problem.  Here's a photo of his cool shades.

We just spoke to the docs about how he's doing and all in all they're very pleased and positive.  I'm learning that there is no easy resolve to anything in the CICU though, and this will be a long process of trial and error to get everything stable.  They need to learn more about how his body is working, what he can tolerate and how to best treat his specific issues one by one.  The staff here has been truly amazing and takes lots of time to make sure we're comfortable and understand everything that is happening.  The main cardiologist in the CICU just spent 45 min drawing us pictures and walking us through how and why these things happen and how they're treating everything.  It's very comforting to better understand all the complicated things they're discussing.  For now, Davis is sleeping soundly and Kelly and I are just hanging out to be near him.  I'm looking forward to holding him again soon, but it may have to wait till he's out from under the bright lights in a day or two.  Till then we'll be soothing him from the sidelines.