Bad Withdrawals...

Memphis has had a tough 24 hours.  The Doctors have taken away all of the drugs!  Memphis is now only taking Methadone, blood pressure medicine, and his re-flux medicine.  Yesterday the phenobarbitol and adivan were taken away completely and the methadone was weaned by .1.  Memphis has spent the last 24 hours awake and fussy.  He dozes off for a minute or two here and there and then he is wide awake restless.  He has had a temperature on and off which causes his heart rate to get high.   He has been sweaty and throwing up a lot.  Nothing seems to help him stay calm for very long.  Mom has tried rocking him to sleep, laying on his tummy, swaddling him snug as a bug, putting him in his bouncy chair, and walking with him but still no success on getting Memphis to sleep and peaceful.

Its so sad watching your baby miserable with withdrawal but it is great that Memphis is no longer on all of those drugs.  This is just one more thing he needs to overcome.

Bright side, the phenobarbitol is gone and there has not been any siezures!

Aside from the withdrawals, Memphis is looking better and better every day.  Still working to learn how to suck but he is making progress.  Mom and Memphis practice this every day. His OT therapists said he must have been doing his homework because they were very impressed with how much he is sucking so soon. This of course isn't much and he still can't keep the pacifier in his mouth on his own but more than they thought he would be dong.


Hopefully Memphis can get some peaceful sleep tomorrow...

So today went just about the same as yesterday. He actually gained a little bit of weight though. He is definitely having some issues with reflux. He has been spitting up pretty regularly. We were speaking with his nurse today and she feels like it may be the medicines he is getting. She spoke to the nurse practitioner, and got them to wean the methadone, and remove the ativan and phenobarbital. As of right now, all that he is taking is his reflux medicine and methadone. It is slowly becoming an issue of eating to be able to come home. This will still take a long while, but it is nice getting rid of some of the other issues. He was wide eyed most of the day and a little grumpy. We will see how he does without the extra medicine.

Today was good...

Today was fairly uneventful. They added some extra calories in the breastmilk by adding formula to it. As of this evening he didnt seem to like it. He had spit up quite a bit.

Thankfully there isn't anything else to report to everyone. Everyone have a good night and we will keep you guys updated.

The feedings went up again today to 29cc every hour.  Memphis did ok with this.  He has gagged many times and thrown up a couple of times.   Because of his reaction to the 29cc they will not go up anymore for now. The nurse practitioner today said that he should be taking about 32cc every hour.  Even though they have been going up on the feeds Memphis is still loosing weight.  He has almost lost a pound this week.  Tomorrow they may decide to add calories to Memphis' milk since he isn't  tolerating going up in volume.  To do this they will supplement the breast milk with a little bit of formula.

The oxygen pressure/flow has been weaned from 1 to 3/4 liter.  Memphis is doing great with this wean.  His saturation number has been staying at 100!

Memphis is still working hard on digestion and tolerating milk in his stomach,  Breathing with ease, having a good blood pressure, sucking, and having good muscle movement with his neck, arms, and legs.

So much work for a little man. 

A calm day for Memphis today. It is nice having some days where not alot happens. They are now feeding Memphis 27cc an hour on the continuous feed which is 81cc every 3 hours. This is his full feed! Memphis is doing very well with this, he only throws up once sometimes twice a day. Maybe in the next few weeks they can get him feeding from a bottle. OT has been coming everyday to work with Memphis to learn to suck. He is now taking a passy for a minute or two before spitting it out. He does gag ever once in a while but he is slowly making progress. Therapists are also coming daily to help with muscle movements. Because Memphis spent so many weeks laying in one position sedated, his muscles are tight in his arms and legs. Mom worked with him today on holding his head up.


The pressure flow of his oxygen has been weaned from 2 to 1. When it gets weaned to under .5, that's a number we can go home on considering he has learned how to eat. Hopefully we won't have to go home on oxygen but we are expecting it.

The methadone is still the same no weaning on that yet. The adivan is now being given every 8 hours instead of 6 and the dose was cut in half.

His bilirubin has come down from 8 to 3. It's still high but headed in the right direction.

Memphis still has so much to work on, but is doing very well.

I don't fully understand everything the doctor said about the CT scan, but in a nutshell Memphis does have brain damage. From what I understand he has more fluid in his head around the brain than what he should which in turn makes his brain smaller than it should be. This could be from lack of oxygen to the brain, being on ECMO, or both. So what does this mean for Memphis in the future developmentally? Nobody knows and we won't know until we get to those developmental mile stones. Memphis will probably get an Magnetic resonance imaging(MRI) now that the CT scan showed brain damage.

Children that were on ECMO are high risk for hearing loss. Memphis got a hearing test today and as of today he can hear just fine in both ears! He will have to get a hearing test every three months.

The renal Doctor came by this morning and said that when babies have intensive issues that affect the kidneys it is normal for them to have high blood pressure for several months after. Memphis will stay on a blood pressure medicine until hopefully he levels out and grows out of the need for it.

Still looking yellow but doing good all things considered. The withdrawals still aren't terrible, his temperature was up last night but down again this morning. When we came in this morning Memphis was sleeping peacefully and looking sweet.

Today has been more of the same...

We still have not been given any results from the CT scan. The nurse practioner wanted to talk with neurology first. Hopefully this evening we will know something.

He is looking yellow from his bilirubin being to high. Still no confirmation on what is going on with his liver aside from being on TPN to long. Hopefully now that the TPN is gone his liver can heal over time.

As far as feeding goes, Memphis is now on continuous feeds. So he is getting 20cc every hour for three hours. This adds up to the same as he was getting, 60cc every three hours, he is just getting it slower. This continuous feeding has seemed to work much better for Memphis. He has only thrown up once today where as before he was throwing up some after every feeding. His stomach just could not handle that much milk that fast. I have mentioned before that CDH babies have bad re-flux issues. We knew that feeding would be a long hard road. We are just thankful that his stomach can tolerate that much milk most babies don't even tolerate milk.

OT will come today and work on oral stimulation using taste.

Memphis is doing pretty good as far as withdrawals go. He was taken completly off fentanyl yesterday evening and put on methadone. His withdrawal scores were on the high side last night but looking better this morning. The nurse said that he did not sleep at all last night and he has been in and out of sleep all day today. But he hasn't been agitated or upset, just not sleeping.

He will be getting his first round of immunizations either today or tomorrow. This is exciting because this is something that a healthy baby gets to do!

So here is the information I have received for today:

No results have been given for the CT scan. I should get those tomorrow.

There has been nothing said about Memphis' liver either. The TPN has been taken away completely; now he is receiving 60cc of breast milk every 3 hours as well as some clear fluids filled with the extras he needs. Memphis' full feed is 80cc every 3 hours. We are very close.

For the kidneys and the high blood pressure, Memphis has been put on Enalapril, a blood pressure medicine. The renial doctors have also requested lab work be done in the morning.

We started methadone at 8pm and the fentanyl had been taken away completely. The only sedation type medicine Memphis is still on is Ativan which he gets every 6 hours. Memphis is also still on phenobarbitol, but he will probably go home on this because of the siezurs he had while on ECMO.

Today brings us scary news again...

Memphis will be getting a routine CT scan sometime today. All CDH babies get one of these once they get threw surgery and start getting better. We will keep you posted with these results.

So, I mentioned yesterday that the bilirubin numbers were getting high and the doctor and nurses are worried about his liver. Well those numbers continued to climb higher. They are going to up his feed to 60cc every 3hours at 11am and sometime today take him completely off TPN and give him some clear fluids. The nurse practitioner has ordered an abdominal ultra sound to take a better look at his liver and kidneys. Memphis' blood pressure has also been very high which is why they are also looking at his kidneys and getting the renial doctors back involved. The nurse practitioner said that his liver numbers should have been getting better as the milk went up and the TPN went down. This has not been the case so there may be something else going on with his liver.

Memphis will also see the OT therapist for oral skills today.

Memphis has a big day ahead of him today. Hopefully we will hear that everything will be alright. I will keep you updated as I know.

Today has been a good one.

We are worried about Memphis' liver right now the most. Memphis's is now getting fed 40cc every three hours. At eight o'clock tonight they are going to start feeding him 50cc every three hours. The doctors and nurses are really trying to push Memphis to feed because his Bilirubin number is getting to high. They say the bilirubin number will come back down once Memphis gets off of total parenteral nutrition (TPN). TPN can cause liver injury. The liver damage associated with TPN may be reversible; however, In situations where prolonged TPN is required eventually there is liver failure. Infants are the most susceptible to liver damage from TPN and Memphis has been on it for 10 weeks. Today, Memphis is looking very yellow colored from his bilirubin being to high. The more milk Memphis eats, the less TPN he needs the better his number gets and his color will go back to normal. So what he needs most right now is to be able to get up to full feeds 2 and 1/2 ounces without reflux problems. He needs to properly digest his food without throwing it up. Hopefully in the next couple of days Memphis can be completely off TPN and his liver can heal.

Memphis is still doing good with the nasal cannulas at 40% airflow. They are not going to wean that for awhile. They don't want to push Memphis to hard and end up having to go backwards. I agree going backwards is not what we want. This area will just take time. He can't grow his lungs overnight :-)

The fentanyl has been weaned to 2 mug/kg/h So far doing great with not having very high withdrawal signs which means still no methadone yet.

Memphis is doing great with urine output and his kidney numbers are still looking good.

Now that Memphis has been extubated, OT therapist will start coming weekly to help him learn all the Oral things he has never learned.

That's it for today...

Memphis is doing really well today. They are really pushing to get him off of TPN now, so they are increasing his milk intake. The TPN is tough on his liver, so the sooner we can get him off of it, the better. There really isn't a whole lot going on today on our end. He's been resting in his big boy crib pretty much all day, other than when mom is holding him. It is so nice when he is just looking around all content like. He has been doing so good. Dr. Anderson stopped by this morning to see how he was doing. He mentioned that from the looks of the X-ray, he wouldn't need a chest tube.

Memphis' feelings have been going well. He has had some reflux. They do expect him to have some and so far it hasn't seemed to be so much that the doctors are worried about it.

We will let everybody know if anything else happens.

Memphis got extubated yesterday afternoon around 2pm! He no longer has a tube going down his throat!! He was then put on c-pap for the night. Memphis hated the c-pap, he would rest for about 10 min and then wake and cry. His night nurse said he was up all night fussing. We were told by the Dr. That babies generally do not like wearing a c-pap it is very uncomfortbale for them.
This morning, Memphis was put on nasal cannulas. Nasal cannula is a device used to deliver Supplemental oxygen or airflow to a patient in need of respiratory help. As soon as the nasal cannulas were put in Memphis, he fell asleep. The nasal cannulas were set to give 40% oxygen at first, this was not enough it turns out. Memphis's saturation number started getting low and they had to turn the oxygen up to 50%. Now that Memphis is on nasal cannula, he has to do all the breathing himself where as when he was on the ventilator it did a lot of the work for him. His saturation number which shows how well he is oxygenating has been fluctuating between the high eighties to the nighties. It ideally needs to stay at 95 and above. When his saturation number stays above 95 consistently they will began to start weaning his oxygen. The Dr. Has told us that many times when they extubate a baby they are fine for awhile and then a few days later have to be intubated again. Hopefully his little lungs can handle this and he will never have to have a tube down his throat again.
Now that the tube is out of his throat, OT therapists will come in and help to teach Memphis how to do all of the oral things he has never learned how to do such as sucking and swallowing. Learning to suck and feed from a bottle is Memphis' next big journey. We have been told that this is another very hard road. We will see...

They moved Memphis to a crib this morning and are now letting mom and dad bring clothes in for him to wear. He no longer has to be a naked baby.

They have upp'ed his feeds to 25cc. I don't know how long it will stay that way because Memphis threw up about 10cc immediately after being fed the 25cc. The nurse said that maybe the milk went to his tummy to fast. She may try a different way of feeding him next time.

Still no weaning on his drugs today. Everything stayed the same.

Memphis had a very big night last night, and all in all is handling it very well.

Memphis had a great night last night!  Mom came in the NICU today to see his ventilator rate turned down to a rate of 14.  Just two notches away from 12 and being extubated.  He is still oxygenating very well at this rate his saturation number is 100.  His co2 gasses arn't horrible either could be better but not horrible. Hopefully either this evening or in the morning Memphis will finally get extubated and we will get to hear him cry and make noises for the very first time.  When he is extubated he will either be put on a c-pap or a nasal cannula to assist his breathing and deliver pressurized air to Memphis' lungs.

Memphis has grown so much in the past eight weeks.  When he stretches out to his full length he is kicking the end of his little bed. They have had him in a infant warming bed; these are beds with radiant heaters over them.  I asked the nurse when Memphis can be put in a crib.  She said that she would turn off his warming bed and see how well he holds his own body temperature.  If he does good holding his temperature then he will be able to move to a crib.  So far so good with this, he is actually a little on the warm side with a temperature of 99.  Maybe there will be a crib in the near future.

That is our biggest news for the day.  Memphis is still getting 20cc of breast milk every three hours. None of his sedation medicine has been weaned today.   His BUN and Creatinine numbers are exactly the same as yesterday.  One of the nurses told me she was so amazed at how his Kidney numbers have come down so quickly. He is at a normal weight for his size and age. 

A very good day today.  We will keep you updated on how the extubation goes. 

The dialysis catheters are out!! They were taken out this morning and Memphis did great. For the first time in eight and a half weeks Memphis no longer has anything in his right jugular!
The nurses have him laying on his right side and off the left. This will be good for his head. Memphis had so much Edema in his head on the left side from laying on It so long. Now that they have turned him over and all the edema has shifted around, his head looks very swollen all over now.

An update on how Memphis' kidneys are functioning: Memphis' BUN number was 29 today and the creatinine was .5. We were told they wanted his BUN in the 20s which it now is. I'm not sure what they want the creatinine number to be but I will find out as soon as I talk to the nurse practitioner. The doctor says that his kidneys are functioning much better.

They weaned his scheduled Ativan to every six hours from every four hours. Memphis has still not shown any big signs of withdrawal which is great. Methadone is still on the back burner if he needs it.

The ventilator has been weaned some more today, his rate is now set at 22 and the o2 percentage is at 36. The magic rate number is still 12 to come off the ventilator. Memphis is headed in the right direction. If he keeps having good gasses (good oxygenation and co2 exchange) he may be able to get off the ventilator sometime next week.

So now that we have survived ECMO and surgery, there are now other things we worry about. The big one being the healthy growth of his left lung. Another big worry is healthy brain function. Being on ECMO brings many risks of down stream difficulties. He is now at risk for having cerebral palsy and other central nervous system(CNS) issues. We won't know weather or not Memphis will have any CNS problems until he is older. Having good functioning kidneys. Having a well functioning digestive system. All these things have been made difficult due to missing a lot of the normal developmental cues. For example, the sucking reflex that babies are born with is gone. This will make feeding from a bottle a very big challenge for Memphis.

I know many of you have been following Levi's journey as well. I wanted to let everyone know that Levi passed last Friday night. The funeral was yesterday at 1pm. It was a beautiful service. He just had to many problems to over come. He had a malformed heart as well as a malformed diaphragm. Each problem made the other more difficult to treat. Chris and I spent seven weeks getting to know Levi and his wonderful family. Our children were friends with their children.  They have touched our hearts so much, it is so sad to see a beautiful baby go threw so much bad in such a short time.   

Last night Was rough for Memphis. He got very upset and started kicking his feet and Flailing his arms. For a normal healthy baby this would have been fine. But for a baby with IV's and picc lines this is not so good. Kicking his feet resulted in him kicking out his picc line which is his central catheter that the doctors use to give Memphis his fentanyl drip, TPN nutrition, and arterial line fluid. When putting a picc line in, it has to be a sterile environment so mom had to leave the room. His nurse last night stuck him several times trying to get a new picc line in but two hours later was unsuccessful. Mom got to go back in with only enough time to give Memphis a kiss goodnight before it was time for the NICU to close.

Today, The nurses were more successful at getting the picc line in. They did this while mom was gone which in turn didn't interfere with time away from Memphis.

Feedings went so well yesterday that the nurse practitioner decided to give Memphis 20cc of milk today. So far so good. No throwing up! The goal here is that Memphis continues to go up in the amount of milk he receives during a feeding and lower on the amount of TPN nutrition he receives until the TPN is completely gone.

The ventilator settings have been weaned some more today to a rate of 26 and the O2 percentage is at 38. Out goal rate is still 12 to get off the ventilator all together.

The dialysis catheters are still currently in his jugular. They had to get the new picc line in before taking these out. This is because if they were not able to get a picc line in they could have used those catheters for central access instead. Hopefully they will come out this evening. I will keep you updated on how the surgery goes.

Lastly, Memphis saw the PT and OT therapists today. the OT has made him a hand brace for his right hand that he will wear for 3 hours on then 3 hours off. Somewhere during Memphis' ECMO time his wrist on his right hand became limp. He still moves it fine and grips his fingers fine they think it just got to tight and needs to spend some time straightened. Memphis neck and head on the other hand are a whole nother battle. Because he has spent 8 weeks lying on the left side of his head that side of his head is now completely flat and he screams and cries when they try to turn his head back to the right. He has always had canulas in the right jugular so he hasn't had a choice but to lye on the left side. The PT will now be working with him a few days a week to stretch this muscles out and get his head moving in all directions like it should. Hopefully getting him off the left side of his head it will round back out over time without needing a helmet.

Between seeing the OT, PT, and getting a new picc line Memphis has had a stressful day. He has been given a bit more sedation medicine and is now sleeping away his long day.

Memphis did great with the 5cc of pedialyte yesterday.  Today the nurses are trying again to feed him breast milk. He is receiving 15cc of breast milk every 3 hours.  I hope that he digest this well and there is very little reflux. So far today, he has had two feedings and done will.

They have now completely weaned the versed drip and taken away the fentanyl PRN. Memphis is still on a fentanyl drip, ativan, and phenobarbital.  He also still has a versed PRN if needed.  Wow our little man is on so much drugs to help to keep him calm and happy.  We have not started methadone yet, but if Memphis starts showing signs of withdrawal as they continue to wean the drugs they will start him on methadone. 

As you all know, Memphis was on dialysis for over fourteen days.  He has now been off dialysis for some time and doing great with producing urine.  He still needs to make "higher quality urine".  What does that mean?  The blood urea nitrogen or BUN test is primarily used, along with the creatinine test, to evaluate kidney function in a wide range of circumstances, to help diagnose kidney dysfunction or failure. The blood urea nitrogen test is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a by-product from metabolism of proteins by the liver and is removed from the blood by the kidneys. Memphis' BUN number is in the 60s and needs to be in the 20s.  His creatinine number has come down from 1 to .6 but still needs to be lower.  We keep saying that his Kidney numbers are high.  I hope this helps to explain what that means.  So still he needs his kidneys to work better.  BUT, the good news is this is not stopping the Dr. from removing the internal jugular catheters that are in the jugular vein on the side of Memphis' neck.  Tomorrow, Memphis will be getting the catheters out and finally for the first time in 8 weeks he will not have anything in his jugular.  This of course will be a surgery. So we will hope for no infection and a smooth operation.

Still do not have to get a chest tube as of yet. His x-rays keep looking better.  We have not actually seen a x-ray in a while, but the Dr. keeps saying every day that they are looking a little better.  Which we take to mean a little less fluid in the left lung every day.  He keeps making a little progress every day!

Today has been pretty calm around the nicu. Memphis gained about ten grams last night, which isn't very bad compared to the hundreds he has gained in previous nights. They haven't weaned his ventilator today yet, because of some blood gases that were on the bad side last night. Even though it hasn't been weaned it is still on a fairly low setting of 32. They did wean his medicines however. The versed that he had been taking for quite a while has been removed completely today. Versed is a sedative, and is not extremely habit forming. It has some side effects related to withdrawals, but nothing particularly severe. The fentanyl that he has been on pretty much the whole time, has been weaned down by .2 today. This medicine does have severe withdrawal chances. They are taking it slow on this one. We expect more and more weaning over the next few days.

The doctors have started him back on Pedialyte today. He gets five cc every three hours. if he can tolerate this, and keep most of it down, they will attempt breast milk again in the next few days. We hope he can tolerate most of it and get the TPN weaned down. Being fed intravenously is good, but it has a tendency to damage their liver. The faster he can eat by mouth, the better off his body will be.

The doctor hasn't stopped by to talk with us over the last few days now, so I have no idea on the chances of him getting a chest tube. He has been outputting quite a bit of urine now, so hopefully his body will be able to handle the fluid in his chest cavity. Dialysis hasn't been mentioned again as of right now, but his kidney numbers are a little bit high.

He day has been pretty calm today. He has been mad just a little bit, and it hasn't taken long to calm him down from that. He's just been lying around, and mommy has been showing him baby einstein movies on the iPad (which he really enjoys).

Today has been a pretty good day for little Memphis. His rate has been turned down a little bit. They have weaned some of his medicine again. We are hoping that it doesn't affect him much. He is still off of dialysis. His lab numbers were a little off, but mostly on the low side. Dialysis is still not going to be restarted, but it isn't completely out of the picture. He has been producing urine more and more every day. Last night he had about 500 cc out. Already this morning he has had close to 62, and he has a full diaper now. Everything seems to be going in the right direction. They have spread out the time between labs and gas reports, they have removed the pre-arterial saturation monitor, and they have taken away our dedicated nurse. Now the nurse that is in charge of Memphis, is also looking after another baby too. These are all good things. He is getting better and in less need.

Michelle has been able to hold him every day now, and he seems to like it. I got to hold him for the first time this morning!

After consulting with the nurse practitioner, she said that a good estimate of when he would be able to come home would be the first of the year. We were hoping more of around November, but they still want to see a lot of progress from him. This progress will be slow. They need him to keep milk down, and then eat from a bottle. They also have to wean his pain medicines all the way down. His ventilator also has to be removed. All of these things will take a while.

We would like to start this blog by saying thank you so much to everyone out there that is working hard to help heal Memphis. We have seen more than once that what you are doing has helped Memphis so much. The biggest example of how you are helping comes from the first 24 hours after surgery. We were told by the doctors that there would be no honeymoon period after surgery and to expect him to be very very sick. Not only sick but high risk for his pulmonary hyper tension returning. So we prepared for the worst. But, Memphis surprised us all including the doctors and nurses with a honeymoon period like no other. Memphis did so well during those first 24 hours after surgery that they had the ventilator turned all the way down to resting settings. He was oxygenating and releasing co2 like he was a healthy baby. In fact the doctor said that if he hadn't just come out of surgery he could take him off the ventilator all together. The doctor could not explain this phenomenon. They next several days after surgery Memphis caught back up with the curve he was expected to be on but in our opinion he missed the worst part of that curve. You all definitely made surgery day much easier for him and for that we thank you.

Memphis had a rough afternoon yesterday. His was running a temperature of around 102, breathing very quickly, and throwing up. These all could have been symptoms of either a stomach bug or withdrawal from the narcotics that they are beginning to wean. The throwing up could also have been reflux from the feedings. There are so many different things that could be happening that for right now they are just watching to see what he does next. We hope they can narrow it down and figure out how they can help him soon. We will let you know more when we know.

We finally have pee!!! Yesterday, Memphis had 180cc output for the day. Today, we have alreday had 110 out and a lot more day to go. But, dialysis is still in the future if he doesn't start making "high quality pee". Right now Memphis is just urinating water. His kidneys have to also process his nutrition, medicines, and keep his electrolytes stable. To sum things up his kidney still need some healing time.

As of today, we are not getting the chest tube. The doctor said that he sees a little more oxygen in the left lung and wants to hold off for now on the chest tube. All the chest tube does is release fluid from the left side of the diaphragm. Because his lung is so tiny it doesn't fill up the left side of the diaphragm which in turn had to fill up with something --fluid being the answer.

He has gained some more weight, but having a good day today considering. We will hope that he continues his good morning and have a great night as well.

Memphis has gained some weight now that he is not on dialysis, he is up to 11lbs from 9lbs.  This is alot of weight gain in two days.  Yesterday, Memphis had 16cc of urine output all day.  This morning the Dr. put Memphis on a diuretic that he receives every 8 hours.  After his first dose of diuretic he made 23cc of urine!  hopefully Memphis can keep this up and not be put back on dialysis.  Some of his electrolyte levels are beginning to wavier and his stomach has become very extended from not getting rid of enough urine and bowel.

Feeding did not go so great today :-(
After his 6am and 9am feeding he had some re-flux.  A green acidic phlegm.  Because of this the Dr. has stopped his feeding for now.  We have not been told when they will start back or how.  Instead of giving a 5cc bolus of milk they may decided to give a feeding drip.  We will keep you posted on this as we are informed.

They have begun to slowly wean Memphis on his narcotics.  We were told that this could be another reason for him throwing up.  It could be a sign of withdrawal.

The last big piece of news today is that the Dr. may have to put a draining tube in to help release the fluid that is in the open space where there is very little lung.  The Dr. has said that this is a very normal procedure with cdh babies. They of course hope that they don't have to do it but it happens more often than not. We will know more about this tomorrow.

Thank you for keeping Memphis in your thoughts and prayers.  He has gotten past the worst but still has a very long way to go.

Levi is off ECMO!!  But, he is having a little bit more trouble being off the ECMO machine than Memphis did.  Today has been a hard day for Levi and I ask that everyone continue to pray for and send positive energy to baby Levi.

Memphis passed the "clear fluids" test! The Dr. Had wanted him to start his feedings using pedialyte for 12 to 24 hours before starting breast milk to make sure his stomach could handle the liquids. Memphis took all of his feedings wonderfully without spitting up a thing. Because of this, today Memphis gets to have 5cc of breast milk every three hours.

The dialysis machine clotted off last night sometime and instead of putting him back on immediately today the Dr. has decided to give Memphis a chance to do things on his own. This of course will only last as long as his electrolyte numbers are good. So, here is his big chance to show us what he can do!

They have began to wean the sedation medicine a little. Eventually when they really start pushing him off the narcotics he will be put on methadone to help. We have been told that giving him methadone is the quickest way to get him off of everything that he has been on.

Mom got to sit and rock Memphis this morning. He slept the whole time just looking as sweet as he can be. Little moments like that even though brief and few are the best moments in the world.

Starting to eat

So today Memphis lost about 400 grams. His xray has shown a little air in his left lung, which means that his body has started moving the fluid in his chest. His ventilator has been turned down a little also. All in all he is doing very well right now. They placed a feeding tube in his nose last night. At around 1:15 he received his very first liquids. They gave him 5cc of pedialyte. Now we just wait and see how his body reacts to it. They expect reflux, but how much reflux will there be is the question. He is scheduled to get 5 every 3 hours right now, and after about 12 hours they will probably change him over to breast milk.

No urine today, but hopefully all of this will help that along too. They are going to change out the dialysis machine tomorrow.

Today has given us more of the same. Memphis is doing well, and his gases have been better as of this morning. He gained 90 grams last night, putting us up to 4900 grams. He has been opening his eyes over the last two days. They have been very clear. This is wonderful since for the last week he has been very mad every time he wakes up. Everything is looking good for our little boy.

Please keep Levi in your thoughts as he has a big day ahead of him.

Memphis' day has gone pretty smoothy today. They were able to wean his rate and oxygen concentration down a little bit over night, but his co2 numbers have been on the high side so they turned it up just a little bit. They say that ventilator is a constant roller coaster, going up and down. He gained a little weight last night, and his left side still looks whited out. Today is his last day of antibiotics, and soon they plan on weaning his pain meds down. He hasn't had any extra doses since yesterday, and seems to be doing well. Everything is still going well.

Braden's birthday party was great. Braden had so much fun and got so many cool toys.

Another update tomorrow.

No real news today. They weaned his ventilator rate and oxygen concentration a little last night. He is no where near getting off of the ventilator. His xray looks more whited out on his left side, but his right side looks clearer than ever. He gained a little weight last night, so they may turn the dialysis pump up a little. Everything is going pretty much as expected.

We are going to Huntsville today for Braden's birthday party. He's four years old now.

We will let everybody know if anything happens.

As I was speaking with the nurse today, another topic was brought up, withdrawals. Memphis has been on narcotics now ever since he was born. Within two days after his birth he was put on fentanyl. A few days after that, while he was ECMO he was put on Ativan. He has been taking scheduled dose, drips and as needed doses of three different pain killers/narcotics for seven weeks now. They are starting to wean him now. All of this means that he will start having withdrawals. This is a typical response and what they treat it with is methadone. This is a replacement that they will replace the other drug, and wean him off of. She said the reason for this is because they can wean it faster than they can wean the others. Then we spoke of feeding, and issues related to that. All it did was remind me of how long we truly have left in here. Hopefully all of these will go quickly

This morning has brought us just about the same news. He is doing well, as well as they expect any CDH post operative baby to do. He did so well the first day and now he is kind of catching back up to the curve that he should be at. He looks a little puffy right now, especially in his face. His xray has shown that the cavity where his left lung is, is finally filling up with fluid. His heart is pretty much back to where it should be. He didn't pee last night, but they are planning on waiting for the dialysis pump to clot off and shut down, and then they will attempt to leave him off of it for a day or so. If his kidneys will start back up for the most part, then they will leave him off of it. Sunday will be his last day of antibiotics as long as everything goes well and he isn't showing any signs of infection.

He lost 60 grams last night. That puts him down to nine pounds. It's the smallest he's been in a while.

We will keep everybody updated.

The night was fairly uneventful, other than being a little aggravated and having to get some extra sedation, he just slept. In the last two days he hasn't been able to wake up and just lay there calmly. He is constantly aggravated by something, be it pain or just being tired of laying there. Hopefully, now that the steroids are over, he can be a little less aggravated. His ventilator settings are about the same. They turned the oxygen concentration down just a little, and turned the pressure up slightly. He had a little more urine output during the night, about fifteen cc. The dialysis is still set to leave five cc on, and is working well. we haven't spoken to the nephrologists yet, but we will see what they think about him urinating. He still has some electrolyte levels that need to be regulated, so they need him to be creating enough urine to clear his potassium and calcium. It will be much simpler without the dialysis pump hooked up, but we don't want them to unhook it too early and him get sick.

His x-rays looked about the same as yesterday, so they are still good. Lets hope he can keep up all this good, hard work, that way he can get extubated and start trying to eat next week.

Braden's birthday was yesterday. Four years old! His papa has been telling him all day long that he is the big four-o. He said it doesn't matter that he is 4.0 and not 40. We talked to him in the morning, and he sounded tired, so we didn't get a lot of reaction from him. After he got back from school, papa had got him a cake that said "the big 4.0". We wish we could have been there, and I almost drove home just so I could spend a little time with him. Seeing those pictures made us both a little homesick. His birthday party is Saturday, and we will be in town for that, but it's not really the same. The days are long up here, but hopefully we can get him home soon.

A full 24 hours after surgery

During the day today, we went down on the ventilator quite a bit, almost as far as hey could go, and he is still doing good. They had to go up on his rate later in the evening, kind of what they expected. The nurse practitioner took out his UAC, and put in peripheral arterial access to keep access for them to put the medicines in. While they were doing this he coughed his breathing tube out, along with a huge glob of secretions. He tolerated not having the ventilator well. His saturation numbers went down, but he didn't bottom out at all. This was good in the long run because they needed to put a bigger ventilator tube in anyway, and the huge phlegm ball couldnt have been comfortable.

Oh.... and another thing... HE PEED!!!!!! It was only 10cc, but we will take anything after not seeing any at all for so long.

Good news and good night.

Me and Michelle holding our baby

 

 We got to hold him right before they took him to surgery. This is the first time either of us has had a chance to hold him.

Day 1 after the surgey

Memphis is doing surprisingly well after his surgery. His ventilator rate has been weaned down quite a bit. It has almost been weaned down to where they can't turn it down anymore, which is good. His %o2 concentrate has also been weaned some from 100% to 74%. They all say that they are typically very sick after surgery, and he isn't really exhibiting any of these signs, as of yet. Swelling isn't even an issue yet. All of the staff seems to be amazed and surprised that he is doing so well right now. I think they still expect him to regress, but as of now he is doing great. Still no pee, but even a healthy person won't urinate directly after surgery. Right this minute, restarting dialysis is still up in the air, Dr. Anderson is deferring to nephrology on that issue. If the nephrologist feels like he still needs it then they will put him back on. His x-ray looks good, no fluid in his chest cavity as of yet, which they expect the cavity to fill up. His heart has already moved back to almost where it should be. Dr. Anderson will not push to exubate(remove the breathing tube and ventilator support) him soon, but he is definitely on the right track for it.

He has been awake this morning, and tolerating it very well. If he starts getting aggravated though, they will heavily sedate him. He had the hiccups also, which Dr. Anderson says is good.

No official weight this morning, and his blood gases have been wonderful.

After surgery!!!!

Memphis is out of surgery and doing well. His surgery went as well as it could have. His intestines, stomach, spleen, and some of his liver was up inside of his chest. He only had about 30% of his entire diaphragm. This is much worse than we had expected. A gore-tex patch was installed to makeup the other 70% of the diaphragm. As he grows the patch will stay the same size of course, but the diaphragm will make up in size, making the proportional size of the patch smaller.

He is doing well right now, but we have to prepare for the next days. The doctor has given orders to keep him very comfortable for the next few days, preferably not paralyzed, but asleep and not moving. They can't swaddle him due to the surgery, which is how he has spent the last few days, and seems to be what he prefers. If the sedation works like they want it to, this won't be an issue at all.

He has an approximately 4 inch incision parallel with the bottom of his left ribcage. It looks pretty rough, but that's the least of our worries.

Thanks everyone for all the thoughts, keep them coming.

Going to surgery

Memphis is most definitely going to surgery today. They have scheduled it between 10 and 11, and as of 11:25 they haven't got him ready yet. Just wanted to let everyone know that everything went as planned last night, and they are going to operate today.

Dr. Anderson came by and let us know that Memphis is scheduled for surgery tomorrow. It may or may not happen, but if everything continues on the trend that it on right now, he wants to go ahead and do it. He also explained all of the complications that arrise due to the congenital hernia. He told us that all CDH babies have some sort of gastrointestinal issue, be it small or moderate, they all have them. They all have reflux problems also. The diaphragm is part of the body that controls reflux, and due to the damage to it, it can't do it's job. The fix to this is an antireflux surgery called a fundoplication. CDH babies also typically have issues with eating. If they cannot recover and start eating through the mouth, they are given a tube through the nose for feeding. If this doesn't relieve the problem then a g-tube will be put in their stomach. This is for direct to stomach feeding. Due to the lack of a lung on the one side, they usually have a open cavity there. Fluid will start building in this cavity, and if the body can't absorb and regulate this fluid, a chest tube is inserted for draining the cavity.

There may be a need to insert a dialysis catheter in his abdomen eventually, and it was origianally part of the plan to go ahead and place it while he was open. After further thought on the matter, Dr. Anderson does not want to do it. He feels as it may increase the chance of the patch of his diaphragm becoming infected. If Memphis doesn't start producing urine though, this will become another procedure that he will have to go through.

When they have him in surgery, and are repairing the hernia, they will have to pull his intestines out of his chest. During this they will check for a narrowing of the main blood vessel in his intestines. They expect there to be some, but how much will indicate whether or not they have to do any repair on it.

After placing all of the intestines back in the abdominal cavity, they expect some intestinal malrotation. This is because the intestines are not attached to the inner wall like they should be. They cannot attach the intestines surgically, they basically have to let them fall like they want to.

Another weird issue is that after all of this, his appendix will not be where it should be. This is not threatening at all, but just necessary to know because that later on in life, appendicitis is more difficult to diagnose.

Getting closer

4680 grams, down 50 grams from yesterday. Memphis had a little bit of an eventful night yesterday. He was doing well and his ventilator was being weaned down every chance they got. Around six pm his blood pressure saw a large drop. This also correlated with a rise in his CO2, it went from around 40 up to 66. The range they would like is between 40 and 55. His dialysis machine was turned down to take no extra off, and his ventilator rate was turned up to 60 from 50. Nothing particularly great was changed, but his trend of continuously getting better was interrupted briefly.

Over night they were able to wean his O2 concentration down to 59. The surgeon has stated that he wanted this number at 60 or below before attempting surgery. The nurse said that if they can get the rate down a little, then they may do the surgery tomorrow. He will get much worse after the surgery. Hopefully not too bad.

45 days at Children's Hospital in NICU

We are now 72 hours off of ECMO and still stable!

Memphis has been staying very sedated today to keep him from waking up and being agitated. Being agitated can not only mess up his oxygenation numbers and cause him to shunt but it also messes up the dialysis machine and causes it not to work properly. Yesterday, Memphis spent alot of time waking up and being very upset and angry with the world. There was no calming him down without sedation medicine. The sedation medicine is now on a drip rather than just "when he needs it". Every time he woke he would scream and cry -- We can't wait to actually hear him cry. It is awful to sit and watch him cry and not hear a sound. Although its great to see he is having reactions and emotions. Needless to say, he is not a happy camper when awake. I wouldn't be either.

Last night he had two drops of pee in his diaper! Twice as much as last night still not enough. The nephrologist came by today, they had taken some x-rays of Memphis's kidneys to make sure everything looked ok last Friday. He said that there are no blockages/blood clots in the kidneys and they look fine. This was great news. Now it's all up to Memphis' body to get them going.

The ventilator percent o2 concentrate has been weaned to 63%.

Still no definite date for repair surgery. Hopefully, we will get a date on Monday when we see the surgeon.

Thank you to everyone that has been keeping Memphis in their thoughts. He wouldn't have made it this far with out you. You all have helped him to want to be here with us.

Second stable night off ECMO

Memphis had another good night last night. 48 hours off of ECMO! He kept all his saturation numbers above 95 which is exactly what we want! If the numbers were to get below 95 he is more than likely shunting and his pulmonary hypertension is effecting him. That would not be good.

When we asked the surgeon when Memphis would get repair surgery he said that it would be sometime this up coming week (Tuesday, Wednesday, or Thursday). The doctor would like the venelator settings to come down some more first. This is because once the surgery is over, if Memphis needs the venelator more to help him heal they will have more room to turn up the venelator without damaging the lung. The doctor wants the o2 conc. To be at 60%. Right now it has been weaned to 70%. Memphis is definitely headed in the right direction. We are doing everything possible to keep Memphis calm and un-agitated. Anything could set him off in the wrong direction. Mom is having a hard time sitting back and not messing with him.

The night nurse said that she saw one drop of pee in his diaper last night! Thats not much but we will take it. So far this morning, the nurses have not seen anymore urine output.

Let's keep helping Memphis to continue to make good progress through his journey. He has over come so much already but still has a long long way to go.