Happy Halloween - Boo!

The past few days have been pretty uneventful for Mason.  The doctors have been increasing his feedings and monitoring his labs.  He did receive a blood transfusion yesterday but other than that he has been stable.  The last couple times he hasn't done as well transferring from his bed to mom so we took a day off today.  Hopefully tomorrow he will be well rested and we can cuddle again. They had been weaning his nitric the past few days and stopped it today.  His ventilator settings have stayed the same for awhile now.  There is talk about decreasing them this week and seeing how he does.

As far as the MRSA goes, his cultures that have been sent have all been negative except for the nasal swab.  This means that the infection in his lungs is gone, but he is still colonized with MRSA.  We are unsure of what happens now, will update on this when we know more.       

Below are a few pictures of Mason with the hat a few of his wonderful nurses made him for Halloween since I wasn't able to find a costume or hat small enough for him.  In the first picture he is already telling me to stop taking pictures of him. 

Mason being a big boy with his pacifier tonight before bed.  He LOVES it. He loves it so much and gets to sucking so hard that he sometimes forgets he has to breathe along with it.

Day 31

Mason and I snuggled for three hours again today.  He did great.  His feedings were increased today.  They had to give him some medicine to help get fluid off of his lungs.  The doctors think this is why he has been requiring more oxygen the past two days.  After this medicine he had a x-ray and his lungs looked better.  His blood gas was also better than it has been in days.  He is still having some weird heart arrhythmia.  They seem to happen each time he gets a nebulizer treatment for his lungs.  They held the nebs today and are having the cardiologist come see him just to make sure everything is alright.  Cultures were taken again today to make sure he is negative for MRSA and we won't know the final results until 48 hours after.  So far the preliminary report is negative.

One month old

Today Mason is one month old.  How the time has flown by.  Looking back at pictures of when he was born, Joe and I realized how much Mason has actually grown.  He is turning into a handsome little man.  The doctors, nurse practitioners, and nurses here in the NICU have been great.  Everyone is so caring and his primary nurses treat him as though he is their own son. 

The past few days have been nice uneventful days.  The doctors are continuing to increase his feedings and decrease his ventilator settings.  He is on pretty low settings on his ventilator and his oxygen demands have decreased.  He just needs to grow and get stronger to be able to breathe longer with less help.

Today he had another head ultrasound to check for a bleed. This is a routine one that they do at one month of age.  We won't get the results until sometime later today.  We found out the second MRSA culture that they took this Sunday has come back negative.  They will do another one sometime next week and if it comes back negative we can stop the isolation precautions that the nurses have to wear with him.

Tube or no tube.....

Today Mason had a very good day. I was able to hold him for three and a half hours.  They restarted his feedings and all of his labs looked good as well. 

Yesterday was also a good day until the doctor decided to see what Mason could do.  He wanted to see if Mason was ready to be off of the ventilator.  So at around 7:00pm they turned the rate of breaths the ventilator gives Mason down to see if he would initiate the breaths on his own.  He did.  At about 7:15 they took the tube out that helped him breathe and put Mason on CPAP (continuous positive airway pressure).  Mason did ok at first, he just wasn't quite strong enough.  He lasted on his own for around an hour and a half.  He just wasn't able to keep his oxygen saturation up on his own.  They ended up having to intubate him again and put him on the ventilator.  The doctor said he just needs to grow. 

October 22 - Day 25

Mason had a better day today. We were able to wean his ventilator settings a little.  He is still requiring more oxygen than we would like, but his blood gases have been stable.  His labs are becoming more stable as well.  Mason was put on a "diet" as one of the doctors put it.  He was retaining so much fluid that it was making it more difficult for him to breath so they restricted the fluids they were giving him.  He was able to get rid of a lot of that fluid and is now much less puffy.  All in all, a better day.  

Days 22-24

The past few days with Mason have been a respiratory rollercoaster.  He was taken off of the oscillator on Tuesday and put on the conventional ventilator because he was fighting the oscillator.  He required some medication to sedate him since he was fighting so much.  So far on this ventilator he is requiring alot of oxygen, but his blood gases have been stable.  The doctors are attributing this increased oxygen demand to the steroids wearing off and the infection he has in his lungs. Mason tested positive for MRSA (Methicillin Resistant Staphylococcus Aureus) in his lungs.  MRSA is a bacterial infection that is highly resistant to some antibiotics.  He is on Vancomycin, a strong antibiotic, for seven days to help treat it.  

Mason had to get more blood, platelets, and fresh frozen plasma these past few days.  He was also started on a medication to help increase his blood pressure since he has been slightly low.  Mason is very swollen again due to the sedation medication and his inability to move.  They are restricting his fluids and giving him some medication to get rid of the excess fluids.

What Mason really needs is to gain some actual weight.  We can't feed him while he is on the sedation medication because it paralyzes the bowels as well.  He is up to about 920 grams but they think around 100 grams of that is excess fluid.            

Day by day is a phrase used alot around here. Day by day. 

October 18 - Day 21

This morning Mason's labs showed that he has an infection.  Luckily we sent all those specimens yesterday, but won't have results until tomorrow.  His blood gases have been better today.  He has been up and down on his oxygen throughout the day.  His renal ultrasound they did yesterday was normal.  His chest x-ray looks worse than it has.  The doctor isn't sure if its from the steroids wearing off or from infection.  We will find out tomorrow.

October 17 - Day 20

As they say in the NICU, two steps forward one step back.  Today we took a step back.  Mason had to go back on the oscillator.  His blood gases just weren't improving.  They are hoping that the move back to the oscillator will solve the problem with acidity.  He had been on the convention ventilator for a week and one day.  The doctor said this is not uncommon for babies to go back to the oscillator.  Since being back on the oscillator they are just fine tuning the settings to get his gases back to normal.  Feedings were stopped today to give the bowel some rest just in case of infection.  They took specimens from his blood, urine, and lungs to test for infection.  He was also started on antibiotics again just to be on the safe side.  We will not know the final results of the tests for 24-48 hours.  We will also not know the results of the scan of the renal system until later tomorrow when the radiologist reviews it.  Today his urine was clear and yellow. 

October 15 & 16 - Days 18 &19

Mason has been doing about the same these past few days.  Ventilator settings go up and down as his blood gases change.  He did have to receive a blood transfusion today, but they think its probably because they have been taking more labs in the past few days.  The doctors have been watching Mason for infection because he hasn't been urinating as much as he should, his blood gases being acidic, and dropping his oxygen saturation several times.  His urine was also bloody tonight so they sent that for a culture and analysis.  We won't get the results back for at least 24 hours.  They will be doing an ultrasound of his kidneys in the morning just to look and see what is going on along with some more labs. 

Pictures

October 14 - Day 17

Mason had a repeat head scan today to look at the small bleed he had on day ten.  IT WAS NORMAL!!  The doctor was very happy to see that everything was fine and he would just need a routine follow-up scan at 30 days of life.  They are very impressed with this because of everything that Mason has gone through he is at such an increased risk for a bleed. We are advancing his feedings more today since he is tolerating them well.  Plan to continue to decrease his Fentanyl drip (pain med).  They also lowered one of his pressure settings on his ventilator today and will check a blood gas this evening to see how he is tolerating it.  Big day for dad today....he is going to hold Mason for the first time this afternoon! Pictures to come later today :)

October 13 - Day 16

So far so good today.  Mason is down to around 30% on his oxygen requirements on the ventilator. The everyday air we breathe is 21% oxygen.  He is still at the same settings for pressure requirements though. The doctor said it will just take time because his lungs are so immature yet. He will finish his course of steroids today.  They are starting continuous feedings.  He will be getting 0.7 ml of breastmilk per hour.  The plan for this afternoon is to spend as much time as possible with Mason on my chest.  Hopefully he does as well as he did yesterday. 

October 12 - Day 15

Mason had another good day.  Feedings continue to go well.  He is requiring less oxygen today than previous days.  Joe was a little nervous about holding him yet, so I spent two hours with Mason on my chest.  He did AMAZING!  Joe and I read him his first book while he was on my chest as well. We are beginning to really appreciate the nice uneventful days in the NICU. 

Day 14

Mason is two weeks old today.  They were able to turn his ventilator settings down some and he tolerated it well.  He continued to receive the small feedings and tolerated them.  They are also weaning his pain medicine drip.  I got to hold Mason again last night.  Joe wants to wait until he gets a little bigger. 

Everything was going really well last night until the nurse decided to retape Mason's breathing tube.  Somehow during this he was extubated (breathing tube came out of place) and they had to use the ambu bag again to help him breathe.  His pulse also dropped drastically so they had to start CPR.  The doctor was able to re-intubate him after some time.  After that he had a decent night although agitated from all the events. 

Day 13

Mason is still on the new ventilator.  He is on a high setting for his age, but it is still a lower setting versus being on the oscillator.  The doctor said it is a good step forward.  After tonight's doses they are stopping the antibiotics Mason has been on because all of his labs are looking better and he has been on them for seven days now.   The feeding have been going well so far.  They will continue the small 1 ml feedings for five days to make sure he can tolerate it and then advance him. 

Today was a big day for mom and Mason.  I got to hold Mason for the first time.  It was the most amazing feeling in the world... although a little scary.  The nurses and nurse practitioners were there to place him on my chest and make sure all the tubing and wires were ok.  I was able to hold him for about two hours.  He did so well!!  Dad's turn tomorrow :)

Hopefully Mason's blood gases are good throughout the night and we will be able to wean his ventilator settings and nitric tomorrow.     

Mason's sign that his nurse made for him

 Mom giving Mason his first feeding

Mason's home with new blanket from Grandma Bonzi

Wide awake

Mom and Mason

Day 12

This morning the doctor came in and said we weren't going to change alot today and have a nice easy day.....that didn't last long.  He came back about a half an hour later and wrote a page of orders.  Mason was doing so well on the oscillator and his settings were so low that they decided to take him off of it and try the regular ventilator.  This was a huge step forward for him.  They still have him on the nitric because they want to only do one thing at a time.   He is doing so well on the ventilator right now.  He also started feedings today.  He got 1 ml of breastmilk every three hours today and tolerated it very well.  This is just a small amount to get the gut ready.  They will continue to increase this as he tolerates it. All in all, Mason had a very good day.  He sure impressed all the nurses today.

Day 11 cont.

Mason had a very good day.  The doctor was able to wean his vent down some.  Nitric is still being weaned.  He did end up getting a blood transfusion!! The nurses were pretty proud of him though that he made it 36 hours without a transfusion.  They said that is a big accomplishment because there were times when they were giving three per shift.  Other than that it was a nice and well needed uneventful day. 

PDA Results

PDA CLOSED!!!!! Woot Woot!!!! Echo also showed he has very good heart function.  Celebrating with Famous Dave's for lunch, compliments of Grandma Bonzi.

Days 10 & 11

Wednesday and Thursday afternoons were pretty crazy around here. They have been unable to get Mason's oxygen sats up even on 100% oxygen.  The doctor has had to manually ventilate him with an ambu bag because they thought he may have had a pneumothorax both days.  Luckily he did not.  They did xrays and found that his endotracheal tube (the tube that helps him breathe) wasn't in the correct position.  This was probably due to how fidgety Mason is and when they reposition him even the slightest amount the tube could have moved the littlest bit and with him being so small that is huge. They also thought that he could have loosened some junk up in his lungs that was left over from the pulmonary hemorrhage and it got lodged in the tube after they had suctioned.  Both times he recovered very quickly with the manual ventilation and they were able to put him back on the oscillator. 

Mason has not had a blood product in 31 hours!!!!  His labs have stayed stable.  This is a huge accomplishment for the blood product king...as the nurses call him.  We counted yesterday and in his ten days of life Mason was up to 34 blood product transfusions.

So far so good this hour of the day.  Lately we have been taking things hour by hour.  The doctor came around this morning and said things are looking better.  The majority of his labs are normal.  The doctor decided to start steroids for Mason's lungs yesterday because of the two incidences with oxygenation and due to the fact that he is so young and his lungs are so underdeveloped.  Today we are again trying to wean the nitric.  The echo is being done as I type right now to determine how his PDA looks.  We did find out that Mason has a very small Level I bleed in his brain.  The doctor and nurse practitioners are not worried about it though.  They say it is very small and they will recheck it again next week.

Days 7, 8, & 9

Monday and Tuesday were long days of oscillator setting changes.  Mason was having a good day on Monday. They decided to take out the replogle tube that goes from his mouth to his stomach and put in a smaller one that doesn't need to be to suction.  After they did the exchange, Mason just couldn't get his oxygen saturation back up.  They had to increase his oscillator settings and restart him on nitric oxide that night.  They took out the new tube and replaced the replogle which helps with gastric decompression.  Tuesday was a better day because we were able to maintain the current settings and decrease his oxygen needs until around 5:00 pm.  This seems to be Mason's time of the day where he gets naughty.  He was dropping his oxygen sats again.  The nurse decided to try and put him on his stomach.  He seemed to really like that and his sats came up.  When came to visit at around 1:00 am this morning he was again requiring more oxygen and they increased his settings drastically and gave him a medication to help him relax because the doctor thought he was fighting the oscillator.  When I came back at 6:00 am his settings were way down.  The nurse said he reacted really well to the medication and they were able to wean him way down to lower than he has ever been.   

The echo on Monday also showed that his PDA wasn't improving so the doctor decided that it was time to start the medication to close it up.  They started it at 1:00 am on Tuesday morning. This is given every 24 hours for three doses and then an echo is done to see if it worked.  He can have three courses of this medication if needed.  The doctor thinks that the PDA is what is causing some of his oxygenation problems because it is causing fluid to build up in his lungs.

The doctor just came around and said the plan for today was a PICC line, IVIg, more platelets, decreasing the nitric, and the usual labs and xray.  A PICC line is a peripherally inserted central catheter.  It is a form of intravenous access that can be used for a prolonged period of time.  They will take out the access they have in his belly button since they are only used for 7-14 days because of the risk of infection.  IVIg is a blood product that is given to boost the immune system.  His white blood count has been low, but all of his cultures for infection have been negative.  The doctor just wants to make sure Mason is covered.  They also have stopped the antifungal medication and will stop the antibiotics after seven days. 

Tomorrow will be a big day for Mason. He will have an ultrasound of his head to check for a bleed (first one was normal) and possibly an echo tomorrow or Friday to look at the PDA. 

As you are saying prayers for Mason today, please say some for Grandpa Jack who is in the ICU in Rapid City with a bleeding clot in his brain.

Day 6

Mason had another good day today.  His oscillator settings continued to be turned down.  We got to spend some time tonight with him with his eye mask off.  He had his eyes wide open almost the entire time.  They are going to do another echo tomorrow to look at his heart and see how his PDA is looking.  Thank you all so much for your thoughts and prayers. 

Mason gets bravery beads for every treatment he goes through and here is video that shows his beads so far.

Mason was wide awake tonight when the nurse was doing her nightly checks.

Day 5

Mason had a good day today. We were able to wean off the nitric oxide completely. Throughout the day the settings on the oscillator were turned down as well.  At around 6:00 pm Mason had a blood gas drawn that showed a change and the nurse practitioner had to turn up one of the settings. The nurse laughed that Mason just had to show us that he was the boss and he was the one making decisions. 

He received additional transfusions of fresh frozen plasma, platelets, and blood today. Part of the reason we have to continue to give him the blood transfusions is due to all the blood taken for labs.  Mason only has approximately 50ml of blood total and we are constantly taking blood for labs.  This decreases his total blood volume by around 10% throughout the day.

A tour of Mason's area

Mason on Day 5

Days 2-4

Upon arrival to the NICU Mason was placed on a breathing machine called an oscillator. This machine gives him around 600 breaths a minute and when you look at Mason it looks as though he is vibrating. They are constantly monitoring and trying to improve the settings. So far in Mason's short life he has had eight blood transfusions, five platelet transfusions, and three fresh frozen plasma transfusions. 

Mason gave us quite the scare on his second night of life.  Around 9:00 pm Mason had a pulmonary hemorrhage, which means his lungs began to bleed and he required immediate medical attention.  The neonatologist and nurses acted quickly and got the bleed stopped.  The doctor said Mason responded very well to the treatment and that was a good sign that things would be ok.  Due to the bleed in his lungs, Mason was put on a second machine that pumps nitric oxide into his lungs along with the oxygen.  The nitric oxide helps to open up the lungs so that they can absorb more oxygen.  Since this scare, Mason has been kept stable and is now being weaned off of his nitric oxide.

Mason also has a patent ductus arteriosus which means the blood vessel in the heart that normally closes at birth is still open. They have done two echocardiograms to look at his heart and are monitoring it closely. There is a medication that is given to close the vessel, but his second echo looked better so they are just going to watch it for a little bit. Also, he has pulmonary hypertension which is high blood pressure in the lungs.  The doctor thinks that this could be part of the cause of the hemorrhage.  He also said that the second echo showed that the hypertension was improving.

Some good news that we received today was that Mason's head ultrasound was normal and there was no bleed.  They worry alot about this in premature babies because 90% of them happen within the first three days.  They will repeat the scan on day 10 and day 30. 

Today the doctor was cracking jokes while he examined Mason so that made us feel good about his condition.  We just have to wait and see if we can continue to wean him off the nitric oxide.   We also found out today that they are going to try to keep Mason at his birth weight for the time being.  Once he starts eating and gaining weight we will update that stat daily.

Here is a video of Mason opening his eyes for a few seconds.