Monday, Oct. 21st, 2013

12:24 AM 

Dr. Rabi is back and it looks like we're extubating...

I'm happy to get him off ventilator of course, I just worry about him not breathing on his own and having to reintubate him.  Also they will have to lower his pain meds to make sure he isn't too "sedated" to breathe on his own...I just don't want my baby in pain, especially when I can't hold him. =(

We talked to Dr. Rabi about it and asked our questions...We felt ok with what they are trying to accomplish.  He also mentioned that by doing it at night rather than AM Eli is his only patient and won't have to worry about new patients coming in.

This video is immediately after they took ventilator out (we wanted to take a video in case we heard him cry for the first time...but he still didn't have a voice).  They took the ventilator out and put him on c-pap.  It was good that he was crying because it helped him take big breaths.  That super scary breath where is sounds like he is choking scared me, but the doctors were super excited about it and said it was really good because it means he's trying to cough up the gunk in his lungs.

12:56 AM

Officially off the ventilator...so far so good!

He's been trying to get rid of all that gunk in his lungs....he's been blowing lots of bubbles and having fun without that thing in his mouth!

The c-pap has to go around his ears, and makes them look so cute! 

Holding his giraffe so he doesn't pull out all his lines! =)

Falling love with Daddy!

And Mommy! <3

Sunday, Oct. 20th, 2013

Eli is doing pretty good.  His ventilator settings have been turned down to 16%, his nitric gas has been turned OFF!, they have taken out his catheter, increased his breast milk to 5 ml (only a tsp.!) every 4 hours...that's the good news.  Bad news is he had a chest x-ray this morning and the upper right side of his lung is deflated again.  They have him propped up on his side to see if that helps and they are also doing the percussion therapy/palpitations on his chest and back...he is NOT a fan! =(

2:07 PM

Eli just got the line taken out of his left atrium of his heart (they only take one out at a time).  It looked painful and he was not a happy camper. =(  Once he got more pain meds, his blankie and more head rubs he was content. =)

4:34 PM

Dr. Rabi just came in and turned Eli's oxygen off on his ventilator to see how he responded.  They had to turn it back on because he can't breathe without it.  They are lowering his dose of fentanyl (pain med) because they think this might help him breathe better on his own.  It's a hard balance of trying to wean him off things but keep him comfortable. 

He also just had another percussion/palpitation treatment (on his chest and back) to try to pop his deflated lung out.  He really really hates it, it's horrible to watch... looks like they're beating my kid up!  But it's so good for him though.

It's going to be a long night for this mama with him having his pain meds lowered and not being able to pick him up!  I have a sound machine that has the sound he used to hear in the womb of my heart...I like to think it helps but we'll see.

9:09 PM

I WANT TO KILL THE DOCTOR ON CALL RIGHT NOW!!  

He will come in for 2 SECONDS and say Eli needs his pain meds lowered...he needs to extubate, etc.  And the nurse will fight him and defend Eli and say I have had this baby for 3 nights straight...when his pain meds wear off he gets uncontrollable, he turns purple, he starts pulling on his cords/lines, we swaddle him, make sure he is changed...his heart rate goes up, his respiratory rate is too high, and the only thing that helps him is .1 of versed.(pain med)

And he just scoffs at her and is like ok I'll come back in an hour.  But before he leaves he makes her turn off his oxygen...and guess what he stopped breathing and they had to turn it right back on.

So he comes back later...night nurse is on now and has the same exact fight with her.  "I KNOW this baby...."  This nurse makes the point:  Why would we extubate him at night, it makes more sense to extubate him in the morning when he is more awake and after he has is chest x-ray to see if his lung is still deflated.  Because if they extubate him and he can't breathe and they have to reintubate him it sets his recovery back 2 days.

So then he says to lower pain meds, he wants to SEE him when he is awake.

So just make my baby suffer just so you can see exactly what TWO nurses who have spent 2-3 12 hours shifts SOLELY taking care of him meant......ugh!

Saturday, Oct. 19th, 2013

Eli is EXTREMELY swollen...he looks fat but this is all swelling.  He is so swollen his neck pushes out his ear lobes.  I got really emotional seeing him like this this morning because it reminded me way too much of the way my Grandpa looked when he was in kidney failure.  The nurse said it is normal...a combination of surgery recovery and being sedentary.  She gave him a diuretic to help get rid of some of it.  Then Eli started crying really hard (although no sound because of ventilator).  I lost it, it is so unnatural to watch your baby in so much pain and crying and not be able to pick them up!  (I still have never held him).  She gave him some more pain meds and he calmed down.  They are kind of weaning him off stuff but at the same time trying not to make him too uncomfortable.  All of his stats are really good...sometimes his meds make his blood pressure drop though.  Today they finally fed Eli for the first time with pumped breast milk through a tube in his nose.  (Prior to that he had just been getting "IV nutrition/vitamins).  He has made progress with his ventilator settings and his blood gases look great.

He is so swollen!

(Eli crying.....saddest thing ever..)

1:41 PM
Look who just came to visit us! This is Brian's mom's cousin. We found out she is the director of pediatric neurosurgery here at Riley! Jodi said she was actually in surgery in the OR next to Eli and had the same anesthesiologist nurse assistant later in the day...and the nurse said "I got a really complex heart case today...I had lots and lots of equipment I was prepared to use because they did not expect him to do well at all with the state he was in going into surgery but he did so well! Everyone in the room was SHOCKED, he is a little miracle and handled everything so well, we were even able to close his chest and he did not require ECMO( machines that do the work for the body after surgery)" and Jodi cut her off and said "was this by chance baby Eli?" And she said "yes! How did you know?" And so Jodi told her who she was and our connection and the nurse kept going on and on about how he surprised everyone and Jodi told her about all the prayers on his behalf and his priesthood blessings he received, and that is why she felt he shocked everyone.

It was pretty emotional hearing Jodi talk because not once did anyone tell us exactly how worried about his surgery they were in any way. It's interesting to hear the other side, it shows even more how much of a miracle my sweet little Eli is. I know this is no coincidence. I know that because of all or your prayers and faith in him he made it ok. I'm sure he had many angels in that OR with him!

5:53 PM

Seeing my baby's eyes for the first time and I'm so in love!!

This is the first time we have seem him awake and HAPPY!  Yes I know he doesn't look much awake...he's a little drug addict haha...but it is so sweet to see him alert but not crying his eyes out.

Friday, Oct. 18th, 2013

Eli had a really good night last night surprisingly with very little fluctuations in his oxygen sats.  They increased the pressure/volume in his ventilator and that seemed to help.  His upper lobe of his lung popped out last night and he was able to get some good rest without nurses bugging him because his o2 sats were above 80 all night!  She said she even saw it at 95 at one point.  Then this morning his other side of his lung collapsed.  The cardiologist said a big reason this keeps happening is because of the ductus arteriosus that they have been keeping open with prostaglandins.  He said he felt when that is closed in surgery, that this will help the lung collapse issue.  They did some vibrations on his chest and back again to try to pop lung out.  There are so many people in the room and the worry is about his left side of lung and whether or not they should move on with surgery.  Right now they are moving all of his equipment over to transfer isolette and then we will be going to OR if they get the go ahead from surgeon.  Brian and I have a little anxiety right now remembering what his initial transfer was like.

7:37 AM
Surgeon just gave go-ahead.  It took lots of planning and preparation to get him in his transfer box.

8:06 AM

It was a very scary transfer with Eli's nitric gas flowing fast but he did awesome!  Scariest 5 min. ever, but we made it.  Then we had to kiss him goodbye.  They just took him back.  It's going to be a long day!

9:21 AM

Brian and I are anxiously waiting in the surgery waiting room.  A nurse will be updating us every hour.  She just came with her first update.  The first thing they did was sedate him through the venus line in his belly button (it may have been a combination of gas in his mouth/nose too).  Once sedated, they started working on getting an arterial line in his wrist.  They need to do another venus line and are having a little bit of trouble but working on it.

10:21 AM

Second venus line is in, they also opened his chest about 30 min. ago.  Now they are stitching in his chest tube.

12:14 PM

It took us awhile to get an update because last time the nurse came around I was in another room pumping and Brian was asleep and she didn't want to wake him up.  

Dr. Rodefeld said everything is going great, they are in the home stretch.  They have switched the pulmonary artery and aorta vessels and are now working on the tiny coronary arteries which is the most difficult part of the procedure. Dr. Rodefeld feels confident and said his anatomy thankfully is pretty straightforward (which I think means there were no kinks in coronary arteries which would make surgery more difficult).  This is the best news yet, because it was something we were so worried about!

12:42 PM

Keeping ourselves busy...We got Eli this giraffe because in the NICU all of his stuff (blankets, wall decorations, wing of NICU, etc.) were giraffes.

1:50 PM

Surgery is all done!  Dr. Rodefeld is very pleased with the results, they were even able to close his chest because there wasn't any swelling!  He said they are still going to keep him on nitric gas and everything he was on before because his pulmonary hypertension will take a couple of days to resolve.  He said all of his stats look great!  They are going to keep him pretty heavily sedated so he can rest and recover.  In about 3-4 days they will be able to take out his chest tube, and start weaning him off of everything connected to him.  Dr. Rodefeld said he benefited greatly from being a big baby...Glad my pregnancy woes weren't for nothing! lol  

He is in recovery room right now but we will see our little "Iron Man" soon!

4:50 PM

We finally got to see Eli!  It may look otherwise but Brian and I are marveling at how wonderful he looks, such a miracle!  His color is SO much better, the picture doesn't do it justice.  He's a little whitie like me now!  (the blue around his chest is just the sterile solution stuff they use before surgery.  They will keep this on because it continues to work after surgery killing off bacteria).  I rubbed his head and he just kind of softly turns it or licks his lips (before we could not touch him because it would aggravate him so much that his stats would go down and he would make this gut wrenching "screaming face" but no sound because he can't cry with ventilator).  This is the closest we've seen to a normal newborn and we are so so happy.  Even more impressive were his stats.  His oxygen saturation was 99%!  We are used to seeing his o2 sats CONSTANTLY going up and down (trending down) and loud beeping and alarms going off and constant care of nurses trying anything they could to get sats up again.  These pictures look intense but this room is so quiet, I cannot even begin to describe the overwhelming relief we have.  I know he's not "cured" but still!  Brian and I both cried and expressed our gratitude to Eli's surgeon, they really do perform miracles every day.

That little foot breaks my heart though for how many times he was poked. =(  He has an arterial line though so when they need to test his blood gases every couple of hours they can just draw blood from that now.

Thursday, Oct. 17, 2013

Eli's oxygen saturations have been fluctuating and trending around 70%.  His x-ray this morning showed his upper lobe of his lungs has collapsed again.  They have been having him lay on different sides to see if that helps.  They also used a tool to apply small vibrations to this part of his chest to see if that would help "pop" the upper lobe.  They also increased his oxygen to see if this would help too.  In a little bit he will have another x-ray to check to see if the lung is still collapsed.  The reason his lung is collapsing is due to the pulmonary hypertension.  As far as the pulmonary hypertension goes, they are still practicing "minimal stimulation" to help him relax his body.  He is still on sedation and regular pain meds.  He is also still on the nitric gas.

Eli's Arterial Switch Operation is scheduled for tomorrow morning from 9 AM-2 PM.  Then he will be in recovery for 3-4 hours before he is brought out.  Then he will be in the pediatric cardiac ICU.  He will be in recovery for 10-14 days.  When he comes out of surgery, there is a 75% chance his sternum will have to remain open due to swelling for about 3-4 days.  Because of this, they will heavily sedate him and also give him IV medicine to temporarily paralyze him to prevent any movement.  When swelling is down, they will close his sternum with wires to hold it together.  These will be permanent and not come out (we like to call our little super hero Iron Man!  Seems fitting.)  Then they will also close him up with stitches.  He will also have a chest tube from below the sternum for 2-4 days after surgery.

12:20 PM
Eli still does not have feeding tube.  They have been giving him IV nutrition/vitamins with everything he needs.  This is because if he had anything in his stomach it would require more oxygen to go to stomach to digest it and they would rather his oxygen to to his more important organs.  He's actually gained a tiny bit of weight from all the fluids they've given him.

X-ray was just done, upper lobe of lung is still collapsed.

6:12 PM
It is so hard to watch this little guy fight.  Because of his breathing tube he is not able to cry, in fact the only time we have heard him cry was when he was born.  He scrunches up his face and looks like he is crying but can't because of his breathing tube.  It is the saddest thing and it makes us feel so helpless as his parents.  We also have not seen his eyes at all yet...they have been closed this whole time.

9:15 PM

Daddy just gave Eli another priesthood blessing...it's amazing how much peace came into the room.

Wednesday, Oct. 16, 2013

Eli has taken another turn for the worse. =(

His pulmonary hypertension is worse.  Overnight the cardiologist came in and has been with him and they started giving him medicine to sedate him every 3 hours.  They are planning on getting him on a constant drip (sedation) now.  If he does not improve or gets worse, they will start talking about the need to give him medicine to temporarily paralyze him.  His oxygen saturation has dropped to 70%.  They are going to do what's called "minimal stimulation".  They have ear muffs on his ears and have now closed the top of his isolette to drown out as much noise as possible.  They said we are still somewhat allowed to touch him but it can only be a firm hand on him, no rubbing.  They are hoping these measures will help his body relax and aid the hypertension.  Brian is going to give him a blessing before it gets to the point where we aren't allowed to touch him.

7:15 AM
The day doctors are getting ready to come on so there's lots of busyness right now.  I just spoke with one of the neonatalogists and she said they will meet with all the other doctors to get on the same page.  They are going to start preparing him to be heavier sedated then they will put in another IV line.  They they will paralyze him so they can do all the work for him so his body can relax better and recover better.  It's one more step to get the body to relax to help his hypertension go down.  He is still breathing on his own really well, it's all about his hypertension now and his lungs.  Since he's not able to progress more on his own they will take over and help him progress with the machines then slowly take him off after time to let his body adjust and take over again after the right progress has been made.  She said it's probably a combination of his heart defect as well contributing, not sure after this what's next if it doesn't work?  Everyone's just doing one step at a time.  She said they want him to be able to do more on his own before his surgery so they might push it back?  It's a very slow wean off of everything so it will take time.

9:20 AM
Brian gave Eli a priesthood blessing this morning.  He was having a lot of hiccups and was very fidgety and agitated.  His stats dropped a lot.  Brian put his hands on his head and chest and he calmed down almost immediately.  His hiccups went away and his oxygen saturation went up to the mid 80s.  He still seems very peaceful.  His saturation numbers have gotten a little better the last little while, but they're still not where they need to be even on 100% oxygen.  I thought it was going to be soon they would sedate him more but I think the doctors still need to meet and do rounds first.  They are also discussing as a team whether or not they should paralyze him.  They just put a blanket over his incubator to block light, but we can still look in if we want.  They are doing everything they can to help his body relax.


10:27 AM
It sounds like they are not going to do paralyzation yet because his last blood gas looked really good and his stats are holding ok right now with just more pain meds to relax him better.

11:08 AM
Dr. Hoyer came in to talk to us... Eli's right upper lung chamber has collapsed which could be contributing to his unstable stats.  He said there are simple things they can do to get it up and going again even just as simple as moving him onto his other side or palpitating the area.  I guess it's not a huge concern in the immediate?  But will work on it...May need to adjust his breathing tube as well.

We also spoke with Dr. Rodenfield, the surgeon who will be doing Eli's Arterial Switch procedure.  He just stopped by to introduce himself.  They tentatively have his surgery scheduled for this Friday depending on how stable he remains.  He reviewed Eli's case this morning.  If they want to give him more time it will probably be Tues or Wed of next week.

For the most part they are really trying to keep things as quiet and calm for Eli as they can.  He has the ear muffs on and his isolette top closed and a blanket over the top.  Even when the doctors come in they speak very quietly.  His stats have been steady so no alarms going off recently.

In 30 minutes they are going to do another x-ray to see if his lung has reinflated, because his stats have been going up, they think it may have.  They said his surgery on Friday would take maybe 6 hours.  Afterwards we would move to a different building to the pediatric ICU for a couple of days at least.

5:48 PM

Eli's oxygen saturation has been dropping again.  Good news is they say it has nothing to do with his lungs.  They said he has great lungs and is going great on ventilator.  They have continued him on the sedation and pain meds and are also giving him calcium to help with his heart.  They are going to give him a blood transfusion in a little bit.  They are hoping the additional red blood cells will help with oxygen and also the additional "fluid" from the blood will hopefully help with the pressure in his lungs.  The nurse is also going to give him an antibiotic as a precaution in case he is septic.  We are physically and emotionally exhausted listening to his alarms go off all the time and watching his numbers go up and down.

6:23 PM
Neonatalogist said with babies they do "packed red blood cells".  This isn't the type of transfusion where they put new blood in and take his out or anything...essentially it's just "added fluids" they are only giving him 2 oz. and he is responding great!

Tuesday, Oct. 15, 2013

The doctors are saying that Eli is developing pulmonary hypertension, so blood flow to lungs is a little restrictive.  Because of this they are leaving breathing tube in to keep oxygen levels high.  He is breathing somewhat good on his own though.  They said after 24 hours with prostaglandins, it should lose the apnea side effect.

3:48 PM
They just did more x-rays on Eli...the tube going into his umbilical cord with medicine is going more into his liver and not directly to the heart.  They are going to reposition it to go better to his heart.  He will be on nitric gas for a long time now and they will slowly decrease it by 1% until his body adjusts better.  The cardiologist was here with the other doctors discussing his treatment and game plan for his surgery.  They're saying he has pulmonary hypertension which is where the vessels are constricted to the lungs so it's restricting blood flow.  So that's why they increased oxygen to better saturate the blood and put him on nitric gas to help open the veins.  I can't stand this emotional roller coaster!  I'm so scared he won't make it to his surgery.  They told us babies with hypertension don't like to be rubbed...so we can hold his hand or put pressure on him so he can feel us, but not rub him.  I guess for some reason it agitates him.  So now we can hardly touch him.

7:18 PM
He is such a good little hand holder! =)

8:00 PM

Wrinkly old man hands and feet.... =)