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. 

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!

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.

Mom and son reunited at last!!

It's been a good day for the Grimsleys.  Mom was released from the hospital at noon and has been reunited with her little boy.  Kelly and Cara were both able to hold him for about an hour each.  He never seemed as peaceful as he was in Mom's arms. We received some very promising news from the attending doctor but are staying cautiously optimistic.  Since he is doing so well they are going to be lowering the ventilator with the hope of getting him off of it tomorrow.  They have also just started giving him some breast milk through his feeding tube.  So he has a full belly and is sleeping soundly. The doctors have said he is doing better than they ever imagined he would.  Our attending is hoping to be sending him home instead of toward surgery.  We had been told this option was pretty much out of the question but our little man is hanging tough......not surprising......he is a Grimsley!!  The next 48 hours will be very telling, he's been traveling down the right path and pray he continues to do so.  A few bumps are okay but any detour and immediate surgery options are back on the table.  So cautious optimism is our mantra for now.  Keep our little guy in your thoughts and prayers; he needs it right now.