Surgery Tomorrow

Memphis has been sleeping all day thus far. A nurse came by and asked if he was ever going to wake up today -- I simply said he is preparing himself for a big day tomorrow.

As with all surgeries, Memphis will not be able to have anything to eat after midnight tonight. He will have to get an IV at some point today so he can get clear fluids after midnight and blood if needed. The doctors have still not decided weather or not they are going to give him a blood transfusion or not. They may just have the blood ready in the OR if needed. The surgeon has not given an exact time for surrey, just an estimated time of early afternoon.

We are nervous about this surgery but at the same time know that it will help Memphis to get better. Wish him luck tomorrow!

3 Days Till Surgery

Memphis is still doing great! He has been gaining a little weight every night and is now looking like a healthy baby. Before the weight gain, Memphis looked weak and fragil. Memphis has now gone five days with no methadone! His withdrawl has come in the form of sneezing and sleeplessness. Even though he is withdrawing and not always comfortable right now, Wow how alert he is! He loves to look at everything and everyone. PHysical Therapy has said that he is doing things a typical three month old should be doing like holding his head up and brining his hands to his mouth which is exciting news.

The Doctor came by yesterday and said his kidneys and liver are finally back to functioning as they should!

Memphis is still having lots of reflux problems. There are times he is struggling so hard to swallow everything back down it looks like it is choking him and he can't breath. The reflux is definitely making him miserable. Because of how bad this is OT has not been able to push feeding from a bottle. His gagging reflex is so bad that even attempting to suck on a pacifier messes him up. It almost seems the stronger he gets the more pronounced his gag reflex gets. Hopfully the fundo surgery will help with the reflux problem. I don't think there is anything to do about the gagging problem, Memphis will just have to figure that one out.

4 Days Till Surgery

As far as I know the fundo/gtube surgery is still happening on December 1st. His hematocrit level has come up from 25 to 26! But, they would like it 30 or higher so we are still looking at possibly getting a transfusion before surgery.

Memphis has been off of methadone completely since last Friday. The last dose given was on Thursday at 8am. Due to this, Saturday was a rough night for Memphis as well as Sunday day. Generally Memphis sleeps through the night, but I came in Sunday morning to hear that he was up all night and very fussy. Sunday he was also awake all day and not super happy about it.

Sunday the WHOLE family got to take a field trip to the Children's Hospital lobby to see all the Christmas trees. This was Memphis' first time out of the NICU unit aside from going to surgery. Memphis, Rowan, and Braden Absolutely loved this. It was great for Rowan and Braden to see their baby brother healthy enough to be able to do this.

We are spending this week focusing on Memphis getting ready for surgery

Memphis is doing great. He is showing a little more growth, strength, and progress every day. As mentioned before, his oxygen has been weaned to a quarter liter which is lower than it has to be to go home. His oxygen numbers are staying at 100 with this wean which simply means he is breathing great! Memphis will go home with oxygen which makes mom and dad happy -- it's almost like a security blanket.

The fundoplication surgery and Gtube are still set for December 1st. Memphis' hematocrit(blood level) is still low. They are not going to give him a blood transfusion as of yet until these levels being so low start to affect his ability to oxygenate. My guess is that he will probably have to get a transfusion before he goes to surgery next Thursday.

The methadone has now been weaned to a small amount(.3) once a day. Memphis has been doing very well with this so far.

Memphis has been working very hard to strengthen all his muscles. He can now hold his head up on his own for a few minutes. He is still working very hard on rolling over. He keeps telling mom that there is no reason for rolling over to his tummy when laying on his back works just fine. He has become very nosey now that he is alert. He loves to have his head stretched way far out so he can watch all the nurses and other babies while being held. He's just checking to make sure everything is running smoothly :-).

Hey everyone! Just wanted to give you a quick update.

Memphis is doing well recently. He has been gaining weight fairly regularly, and is on track to be right where they want him. Although his weight gain is doing better, they still plan on placing a g-tube in him and performing a fundoplication. A fundoplication is a surgical procedure to treat gastroesophageal reflux disease in which they wrap the lower part of the esophagus with the upper part of the stomach, reinforcing the closing function of the lower esophageal sphincter. After this is performed, our stay at children's hospital can be shortened. They are planning on December first for the surgery.

They were able to wean his oxygen today. He is now on a very low flow of oxygen, much lower than he needed to be to come home.

All in all, he is doing very well. Even our nurse commented that he is doing amazing compared with what he has been through.

We will continue to keep everyone informed.

Memphis has been gaining weight "continuously" this week! He is doing exactly what the doctors are looking for. This is the first week he has gained a little weight everyday day! I think getting rid of the Lasix was all it took.

All that has happened today is we talked to the doctor that will be fitting Memphis for a helmet later on. They do not generally even do helmets till 4 months of age. Because Memphis layed on one side of his head sedated and unable to move for so many weeks his head is now flat on one side and the bone has shifted forward some. We are now laying him on the other side of his head in hopes that it will correct itself over time. If it doesn't, he will need a helmet for awhile.

As of now, Memphis is doing great; he is growing like he should and even beginning to get some baby rolls. Now that he is at a stable place and we are just waiting for growth before getting the fundo surgery and g-tube, I will be blogging less. There is only so many times you can say "we are just waiting on countinuous growth" :-). Of course, we will blog if anything new happens.

Keep sending positive energy, we can see its helping.

Memphis has been awake all day! He has had literally 2 hours of sleep since 6am this morning. As the day went on, it became harder to keep him happy. He was so tired you could see it in his eyes but he was resisting sleep. Through out the day, mom has tried laying him in every position possible, holding him, rocking him, swaying, swadling, and singing but nothing has helped put him to sleep. I'm not sure why little man has been awake all day but it may be because they weaned his methadone yesterday to .4 from.5. Methadone is supposed to have a long have life and the nurse practitioner said he probably would not even notice the wean but I think he did notice.


Aside from the methadone wean, everything is still the same. We are waiting for Memphis to show continuous weight gain and growth before anything will happen. It's so frustrating sometimes, this waiting in the hospital for Memphis to grow. He could grow at home right? But them I remember that Memphis is still not quite ready to come home and it would be bad to rush him.

Mom got to give Memphis a bath tonight, Memphis of course hatted it and cried the whole time BUT after the bath mom rocked Memphis to sleep finally and he hasn't woke up since.


Things we need to work on
Lung growth
Healthy brain function
No reflux
His hematocrit level is still very low it is now 25 and should be 30 or higher.
Weight gain/growth
And just having overall good health.

Thank you for all the help and support we have received we can't thank y'all enough. It is amazing how far Memphis has come. Looking back at the beginning, Memphis was a very sick little one with a very small percent chance at life. Now he has a great chance and is making so much progress everyday.

Things are pretty much the same as yesterday except he has had two very tiny spit upps that were nothing but mucus. He has been sleeping for most of the day. Doing some growing and gaining weight I hope :-)
Today, Memphis did not gain or lose weight he stayed the same. This is better than losing, at least it's maintaining.

This is Memphis' second full day off of the Lasix. His sodium and potassium levels were low so they took away the Lasix and that seemed to fix things right away. He is now no longer on any diuretics. Hopefully, he will continue to have a good urine output without it.

That's it for today, Sundays are always very quiet and restful days.

No throw up so far today! Wow it's amazing. Let's keep are fingers crossed that he keeps everything down for the remainder of the day. It would be amazing to have an entire day where Memphis can keep everything down.

The surgeons have been mulling over the idea of getting the fundoplication and a g tube. The fundoplication is a surgical procedure to treat gastro reflux where the upper curve of the stomach is wrapped around the esophagus and sewn Into place. After this surgery, Memphis should no longer have reflux. My concern with this is that fist it's a surgery which brings risks of infection, second he will have to be put back on a ventilator becuase of the anesthia to make sure he continues to breath while under -- he will stay on a vent until he is ready again to come off and breath on his own, third he will go back on TPN until he is healed enough to start feeding again. So, this surgery seems like it will set us back for awhile but in the long run if he stops refluxing it will be a huge step forward not to mention less stress when it comes to worrying about him Aspirating.

The g tube is just a feeding tube to the stomach inserted through the abdomen. This is the tube he will come home with. Memphis will keep this tube until he is able to take full feeds by mouth.


We will find out more on this on Monday. The doctors wanted to see how he did over the weekend before making any decisions.


Other than that, today has been good. Memphis has slept much better than yesterday and hasn't thrown up so far....

Nothing much has changed today. All of his vitals are good, and he functioned about half of the day with his nasal cannula out. He didn't spit up today as far as we know, but if he continues with these reflux issues he will have to get a g tube and a fundoplication.

Today he has shown a bit of withdrawal like symptoms. He has been sweaty all day, and has been having issues with sleeping.

We will let everybody more tomorrow

Today has went pretty much as the last few has other than a few things. In order to try and help Memphis with his reflux, they are reducing his feeding volume and changing the fortifier that they are putting in the breastmilk. They would like him to be gaining around 30 grams per night. He has been moved now. They put him in the back of the NICU in order to try and keep his surroundings quiet. He definitely seems to like the quiet more.

He has had some spit up today, but they have both been mucous looking. They would prefer him not to spit up at all though.

He has been sleeping pretty good over the last few days. We were concerned that his sleep schedule was backwards but it is definitely hard to tell.

Finally gaining some weight! Memphis gained about 100 grams yesterday and 40 more today. Im not sure how much weight they are looking for him to gain becuase he is not under weight. I guess just consistent weight gain. According to growth charts he is right where he should be. I also don't know how long he will have the TP tube before they try going back to an NG Tube. He is still having some re-flux even with the TP Tube so it could be awhile.


We are in a waiting period right now... Waiting to figure out the best way for Memphis to feed here and at home. This could take weeks, it could take months -- nobody has an answer to how long it will take. In the mean time, we are just hanging out visiting are Memphis whenever the NICU hours allow.

Other than feeding, Memphis is doing great. His blood count is still low and we are hoping he won't need a transfusion but they don't do labs till Thursday.

Memphis lost another ounce. Even without all the re-flux, Memphis is still loosing weight everyday. So, nutrition and the nurses are trying to figure out how to get memphis enough calories for him to start consistently gaining weight. The lactation nurse did a calorie test on the breast milk and it was exactly as it should be (20 calories). It was decided to add some lipids to the fortifier that is being mixed with the breast milk. They want Memphis getting 30 calories an hour. Memphis got this knew mixture of food starting at 6pm tonight. Maybe tomorrow he will have gained that ounce back. As of now, they think Memphis is just burning more calories than normal baby because he is working hard to breath with the one good lung, growing, and just having so much healing to do. So much work for a little guy. It's funny a month ago we wanted Memphis to loose weight, he had to go on dialysis because of being fluid overloaded and now he needs to gain weight but can't because his metabolism is so high. His poor body must be so confused.

Updates:

Re-flux -- since Memphis received the TP tube, he is only throwing up around once a day. When he does throw up it isn't milky, it's a greenish color probably stomach acid mixed with some mucus. Every time Memphis throws up, he runs the risk of aspirating and getting fluid in his lungs. This could cause no injury at all OR it could cause pneumonia and even death. So, you see how important it is that the doctors and nurses do everything they can to keep him from throwing up.

Liver -- Memphis billirubin number is good as well as the creatinine number. The BUN is high though. It went from 29 to 50. Memphis is on a medicine to help his liver. His color is much better.

Kidney -- the kidneys are still looking great! His blood pressure is still on the high side and he is having to take a blood pressure medication twice a day. Recently they have only had to give the medicine once a day because the Systolic number has been below 80. This is great! I think the blood pressure medicine makes Memphis nauseous.


Hematocrit (total blood count)-- this is on the low side, it's at 28 right now. This number needs to be 30 or greater, if it gets much lower Memphis will have to get an IV and get a transfusion. Because Memphis has already had so many transfusions while on ECMO It may take his body more time to kick in and realize it needs to make more blood. Hopefully the iron in the vitamins that we're started yesterday will help with this. I really hope he doesnt have to get another IV.

There so much the body must do to function correctly...

Memphis has slept so sound all day, his night nurse is going to have a time tonight keeping little man entertained :-). I have never seen him sleep this good and sound where nothing wakes him. The fire alarm went off twice and it never phased him. Going on a full 8 hours of sleep and still sleeping! He is catching up on some much needed sleep.

Memphis started vitamins today and they weaned the methadone a little. That is the big news for the day.

Memphis is doing great with the TP tube, he hasn't had any re-flux today and just a little yesterday. He still lost weight last night but it was probably because they had just weaned his oxygen and he was using more calories to breath. Today he is breathing much easier so hopfully we can start seeing continuous weight gain. Even with all the weight loss, Memphis is still in the 50th percentile on the growth charts. He is right where he should be.


Not much to report this slow Sunday but tomorrow brings the beginning of a busy week -- I'm sure their will more to report then.

Memphis gained 60 grams yesterday! He did still throw up some, but not any milk just mucus. They are not worried about that for now.

The nasal canula oxygen was weaned to .5 today and so far so good.

That's about it for today, Memphis had a good day visiting with his daddy, sissy, and brother. It's funny how much he loves to just stare at his brother and sister. He must think they are the coolest.

We continue to hope for healthy brain function, healthy digestion, working kidneys and liver, lung growth, and just over all health. I sometimes worry that Memphis will get a cold or virus of some type and that will be the end and all this was for nothing. I know, it's no good to think like that but some days it's just so hard.

We love good days!

Memphis got his TP Tube this morning at 10am.  He did great for this procedure.  Since the TP Tube has been put in to bypass his stomach, Memphis has not thrown up or gagged at all.   He is getting the same amount of food as before -- 30cc every hour.    Memphis will now have a chance to gain some weight and work on healing without the re-flux getting in his way.  Once he gains some weight, hopefully they should take the TP tube back out and again he will get a NGTube. Who knows how long that will take but its for the best.

Memphis has decided that he likes to sleep during the day and play at night.  Mom sits next to his bedside all day waiting to play but alas he sleeps.  He has been having a very restful day today.

So you always know when it is time to receive a dose of Methadone.  Memphis will start showing all the signs of withdrawal about an hour before time to get his drugs.  Poor baby, it will be nice when he no longer has to go through all of this withdrawal stuff.  No child should ever have to go through withdrawal from drugs.

Memphis sucked on a pacifier for about an hour today!!!  He is doing so good.  Not ready yet to take a bottle to feed but it is something.  Its crazy what makes a parent happy while in the NICU.  We never thought we would be hoping for things like pee or to be able to suck.   This whole experience of CDH and being in NICU has shown me how much I took for granted having a healthy baby the first time.  

Another good day...

Memphis has slept real well on and off all day today, he will probably stay up all night because of it. Mom is going to have to get on a knew sleeping schedule if this continues.

His withdrawal today is minimal.

Memphis has only thrown up once today, this morning after his meds. I think that changing his fortifier really helped him. But, even though he is throwing up less Memphis is still losing weight. In the past week he has gone from weighing 11 pounds 15 ounces, to now weighing 10 pounds 14 ounces. Because of the weight loss the surgeon has decided to go ahead and give Memphis the TP tube. This tube will bypass the stomach completely and go into the intestines. This will allow Memphis to get what he needs without re-flux. He will keep this tube until he gains a good amount of weight and then they will pull the tube back out some to where it is back in the stomach. It will then become a NGT tube again. This is a set back for Memphis as far as feeding goes and of course us getting home. But the more weight Memphis gaines and the more he grows the better he will heal. So looking at it that way, this TP tube will help Memphis with what he needs most which is to grow healthy.


The TP tube will be trickier to get in than it would another baby because his intestines are not in the normal placement due to being up in the diaghram before. Well keep you posted on the TP tube.

Finally some sleep!!

This morning I came into the NICU and the nurse informed me that Memphis had slept for 7 hours straight during the night last night. This is very exciting news since for the past two days he has not been sleeping due to withdrawal. Today, Memphis has been sleeping on an off all day and while awake he is content just hanging out. A day with very little withdrawal is a good one.

So, there has been talk about doing a feeding tube that is surgically inserted through the abdomen and Into the second part of the small intestines. This is because Memphis has been doing a whole lot of gagging and throwing up. Bypassing the stomach will help with less re-flux. We of course are hoping that he doesn't have to get this kind of feeding tube.
Today Memphis has only thrown up once so far! I asked the nurse practitioner today if we could change the fortifier he was getting to a sensitive stomach one. I feel like the fortifer was upsetting Memphis' tummy and contributing to alot of the re-flux. The nurses are giving him fortifier to help Memphis get all of the callories he needs to gain weight and grow. They went up on his feed to 30cc an hour of breast milk mixed with some BMC Sim Sensitive fortifier. Since he has been getting the Sim Semsitive and off all of the heavy drugs, he his holding things down much better. Keeping fingers crossed that Memphis won't need to bypass his stomach and he will be able to keep up the good digestion.


That's all for today, Memphis is just catching up on some much needed rest.

Today was better than yesterday for Memphis and his withdrawal. He was able to get a couple of hours of sleep here and there. Memphis has only thrown up three or four times today which is also better than yesterday. He has been able to sit and watch baby Einstein or be held by mom and be perfectly happy. Still having some withdrawal symptoms, but Memphis seems much more content than he did yesterday. Poor little guy.

Memphis has definitely been showing his personality recently now that he is less druged and more alert. If nobody is sitting by his bed side talking to him he will begin to fuss but as soon as somebody comes to talk he will stop and be fine. He would like for someone to be paying 100 percent attention to him at all times. He has also started smiling some.

An update on the kidneys and liver:
His kidneys have leveled out completely and are stable with normal functioning numbers. The renal doctors said that if he ever gets real sick again his kidneys could very easily relapse but for now they are looking good.
His liver numbers are still high but headed in the right direction. His bilirubin was at 2.6; it needs to be less than 1.

Still no change on feeding. He is receiving 29cc every hour on a continuous feed. 32cc is really what his full feed is but he was gagging and spitting up to much to continue going up in volume. They have added a fortifier to the breast milk to insure that Memphis is getting all the calories he needs. Even with the fortifier, Memphis is still loosing weight. He has gone from 11 lbs 9 oz two Sundays ago to now weighing 10 lbs 15 oz. He should be gaining weight as he grows not losing. They will be keeping a close eye on this.

PT came and worked with Memphis today. They worked on tummy time and holding up his head. He did good work.

Over all, today his been much better for Memphis.... Hopefully tomorrow will be even better.