Weak

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

2 Corinthians 12:9

Today has been another down day. Mason has continued to have seizures but these kinds show no signs and are only measured on the EEG. His phenylbarb levels are so high it was time to add another medicine (kepra). We hope and pray that this is effective and it is hard to understand why all of a sudden he is really struggling with his seizures again. Josh and I are very weak. I am scared. We still trust in God and know that He is in control of the situation and believe that He will get Him through this. God is still the only reason Mason is here and that Mason has made it through what he has. Our son is a fighter but he is also God's child and we believe God has him tight in his healing hands. Please continue to pray for all of our family tonight. This has been a long road and we are weary. We are so ready for our boys to be together and for Mason to be home. But we continue to patiently await His perfect timing. He has a plan for all of our lives and we trust Him in everything. He has all of our family in His hands tonight and every night and soon we will all be together. 

Continued prayers needed

So far Mason has had a good day. He had a lot of seizures that did get under control once he got his phenylbarb. They were also having to give him Ativan every 2 hours to keep them under control. Today they were able to wean off the Ativan because his phenylbarb level came back as 79.1. Between the 2 drugs Mason is very sedate. We also talked to one of the neurosurgeons and he looked at Mason's last cranial ultrasound and it does look like he has multiple pockets of hydrocephalus which will make the shunt surgery more difficult. Please pray that this will resolve and not be such a hard fix. Mason is still on the EEG until he is seizure free for 24 hours. We hope and pray this medicine will do the trick since his level is up again. We greatly appreciate your prayers so our sweet boy can come home soon!

Hard day

Mason has had a hard day. He started destating during the night to down low like 30 and 40s and kind of glazing over. Long story short, after doing this all day they started thinking it might be seizures. So they hooked him up to the EEG again and it confirmed that he was. They had tried to wean his phenylbarb dose yesterday and obviously he couldn't tolerate it so they are going to bolus him and increase his dose. He will stay hooked up to the EEG until they get everything calmed down. Other then this set back he is doing well. Just wanted to keep everyone up to date. Thank you for your continued prayers.

Another day closer

Mason had a good day. I think we got some good news but we will see for sure once we talk to ID (infectious disease) tomorrow. The culture from 9/23 that had come back positive was called back in today and it said inability to grow which means it was a contaminate. We have to see if ID will be "bless" this news. Their plan this morning (before we got this information) was 3 more cultures were needed and they needed to be negative and if that was the case then they would add on 3 more weeks of antibiotics. If any of the 3 cultures came back positive then we would have to remove the EVD. So we will see for sure what they say tomorrow since it looks as if this culture was contaminated. Mason is doing ok with his breathing and his feeds. All of his labs looked good and his platelets were up to 75. They are going to increase his feeds 3 times a  day until he reaches maximum feeds and he is now getting lasix three times a day. He had PT and OT today and he did pretty well. His hamstrings and pelvis are pretty tight but responded to stretching. She thinks it is mainly because he has been guarding his belly. They also ordered speech therapy to start working with his oral motor skills. So, all in all a good day. We just have to wait and see what ID says tomorrow. Thanks for your continued prayers.

Waiting

Well, neurosurgery came and drew off some fluid and sent it off for culture. The plan is 3 more negative cultures are needed and then they will feel safe saying that the one positive culture was a contaminate. So now we wait. And pray. Otherwise, Mason is doing good. We haven't had labs since Monday and we have them tomorrow so I am praying that they all look good (especially platelets). They were 52 on Monday so I am really hoping they haven't bottomed out. His lungs are still wet so she is giving him lasix to try to help with that and they are increasing his feeds every 12 hours again until they get to maximum feeds. He decided to become a night owl and was awake from midnight to this morning. His nurse said he was sucking on his passy like crazy and would get annoyed when he lost it. Silly boy. So of course when I was there he was passed out and had finally gone to sleep! So hopefully we will keep moving in the right direction and get some good news in the next couple of days.

"Never be afraid to trust an unknown future to a known God." - Corrie Ten Boom

Another bump in the road

Today we got some not so great news. They had done a total of 5 CSF (cerebral spinal fluid) cultures to make sure they would come back negative for bacteria after they had taken the reservoir out. Well so far all of them had been negative on everything except for the last one. It came back today on the gram stain positive for 1 + bacteria. It is very weird that it would be that way and I am praying that it is just a mistake. Please join me in praying. Also, his cranial ultrasound showed an increase in hydrocephalous and it is pushing over to the right side which makes them think that the EVD isn't working. It has had some out of it so we really aren't sure what is going on. Please pray for this all to resolve and for them to figure it out.

Other than that Mason is doing well. He is tolerating his feeds and they increased them to 2 cc/hour. He stays awake some and sleeps some. His breathing is doing ok and the lasix seems to be helping it. So we hope that this can be resolved easily. I know they are getting infectious disease involved again to see what they want to do and I am thinking they will probably send off more cultures. So I will keep you posted but please pray for healing again. Below is a video that my mom put together of pictures of Mason from birth to now. We thank you all very much for your prayers for us and our little boy.

Our boys

We sure have been blessed by our sweet boys. We try to cherish every moment that we have together. Corbin has had a little bit of a runny nose and was running a low grade fever (99) and hasn't been able to go see Mason. He has asked to go see his brother at the hospital but his Daddy told him he couldn't go because his nose is running. He requested some "pink medicine" to help his nose stop running and the other night while we were saying prayers he really touched our hearts. He said, "Dear God please help my nose stop running so I can go and see Mason." It about made us cry. He is such a good big brother. He is growing up so fast. Can't we slow down time? When we were at Target the other day he picked out this Halloween outfit and toy for his brother:

He LOVES to talk about anything and everything tractors and is such a big helper!

I swear he looks like he is about 4 here.

Helping Mommy pick out some mums.

Our other boy is doing well. He had several bowel movements last night so they were able to restart feeds. Yay! His lungs sounded pretty wet and he was requiring more oxygen so they did increase him to 2 1/2 liters today and did a chest x-ray. They look pretty wet so he is going to get some lasix every 12 hours to help. It is already helping him by tonight. His platelets were 52 so up 2 since yesterday. Hopefully we are going to keep trending upwards! He was wide awake for a little while when I was up there and I got some pictures. 

Staring right at Mommy.

What is going on around here?

We sure do love our boys!

Hey everybody

Mason says hello.

Mason continues to have a good weekend. We are hoping they will restart feeds tomorrow. His surgeon said to give him glycerin chips 2 times a day to help stimulate some bowel movements. He had a smear after the first chip was given to him so that is a step in the right direction. His platelets had dropped to 50 but they changed his threshold to 40 so I am hoping they will go up tomorrow. Please pray for platelets. Other than that he continues to do well. They did reweigh him in the actual scale (there has been some doubt as to whether his weight is true or not using the bed scales) and he weighed 7 lbs. 8 oz. Those scales should be accurate. So he is a big boy! He continues to breathe well and is moving in the right direction so we continue to be thankful. We thank you for your continued prayers of healing for our boy. He was wide awake today, looking around at everything that was going on around until his mommy showed up. I must relax him into a sleep state! But he was wide awake when his Daddy was holding him:

4 months old

Hard to believe Mason is 4 months old today. He weighs in today at around 6 lbs. 4 oz. (he lost some weight). Overall, he is doing well. CSF cultures have continued to have no growth so that is good. The biggest thing now we need is for him to poop so that they will consider feeding. The dr. also mentioned wanting to have him treated on antibiotics for 10-12 days since he had an infection in his belly. So hopefully they will be able to restart feeds soon. We skipped labs today so we have them in the morning so I am praying for an increase in his platelets and that all other things will look good. Other than that he is doing great1 Thanks for your continued prayers. I am ready to have both of my sweet boys home. Today I had a hard time (more so than others) with being away from my boys. I am so ready for both of them to be under the same roof. But right now I just have to focus on the positive that Mason is doing better.

Happy 4 months Mason! We love you very much! Sleep well sweet boy.

Working on feeds

Mason had another good day. His CSF cultures have continued to come back negative thus far and we pray that will continue. His belly looked a lot better today which is good and the changed his replogle to straight drain so hopefully if everything continues to look ok then we can start back feeds soon. His phenylbarbitol level is a little high (67.5) so I am hoping that will be ok. This is the medicine that he takes for his seizures. He was awake some while I was there and looking around and is still doing well on maintaining his temperature again. His platelets had dropped to 70 and we aren't going to check them tomorrow so hopefully he will begin making some of his own again. Other then that Mason is doing great and we continue to be very thankful. I have said this before but what a difference a week makes!

Peaking through the covers again at Mommy. 

Moving in the right direction

I think it is time for some new clothes!

Today was a good day for Mason. We are incredibly thankful! He was extubated and is currently on 2 liters of nasal cannula and doing well. They are continuing on his current antibiotics and the CSF came back negative today! Good news and so very thankful! The plan is to take two more samples (one today and one tomorrow) and if they come back negative then we should be good to go). Antibiotic treatment will continue for a course of 3 weeks. Mason's stomach is still swollen (not as bad as it WAS but still a little puffy) so they are working on getting the edema down by giving him albumin and following it with lasix. He is also having some output in his replogle but you can hear bowel sounds. So we are hoping to get some swelling down and have a bowel movement so that he can start feeds back. Mason's platelets had dropped to 82 and they should start stabilizing since the infection is clearing. They are checking tomorrow so I hope and pray they increase instead of decrease. Other than that he is doing great. He was bright eyed right after extubation and he woke up this afternoon so I could take a peak. We are trying him again in open bed to see if he is well enough to handle it so we got to put him in clothes (or stuff him in clothes). Some of them are a little tight! We are so thankful for some good days. Mason is moving in the right direction and we pray that this will continue. The plan is for him to receive shunt surgery in 2 weeks if the infection continues to clear. We thank you all so much for your continued prayers and time and love invested in our family and for our sweet boy. It hasn't been an easy road by far but we pray that Mason will continue to be healed and grow stronger.

Psalm 126:5 Those who sow with tears will reap with songs of joy.

Happy Birthday Daddy

Happy Birthday Daddy! We sure do love you and are so thankful to have you in our lives. We hope you have had a great day. Mason even made sure that he behaved for a little bit! Corbin was so excited to come downstairs and call Daddy at work and sing Happy Birthday LOUD (as he says it). When I asked him what we were going to get him for his birthday, he looked at me and said cake, Mommy (like what was I thinking?) Silly boy. Below is a video of him singing:

Mason has had a good day. If he continues breathing well tonight then he will come off the vent. The weaned his pressure down to 5 because they want to go straight to nasal canula to avoid CPAP since that can add some extra air in the belly. His platelets had finally made a pretty good jump after transfusion (from 49 to 115). So we are praying we are moving in the right direction with the infection. Neurosurgery did come this evening to get some CSF to send off to test so we will see what comes back with that. We are very thankful that he is improving and me and my boys are very thankful for their Daddy. He is such a wonderful role model for my boys and a great husband. We love you very much!!

Quick update

No doubt about it that your prayers are working and this is one tough little boy! This picture was taken right after surgery when Mason was waking up and trying to figure out what had happened!

Mason continues to do well. His abdomen was measuring slightly larger today so they did an abdominal ultrasound just to check and all looked well. He did go down to remove the reservoir and all of that went well. The dr. did put in another EVD on that side just so they could continue to get CSF to test to see if the infection is clearing. Please pray that the antibiotics they have him on will do the job and clear this infection in his brain. Mason continues to be his bright eyed self and was wide awake after the surgery. We need to work on clearing the infection and getting stronger. He sure is a sweet boy.

Blessing

   Hey this is Josh. Lauren normally does this so lets just hope I don't screw it up. I'll start with Mason is doing good. You probably read Lauren's earlier post and it gave all the details but now she's asleep and I thought I would jot down some thoughts.

   I know early in our journey with Mason Lauren did a post about Blessings but on the way home from the hospital today the song "Laura Story - Blessings" came on the radio and really touched me.  There are so many time when we pray and thank God for all he has given us, Corbin prays every night for his baby brother Mason to have a good night, we pray for strength and healing for our son, I pray for strength as a father and a husband and we pray for God to lead us through this journey. Mason has taught me to look for blessings in all things.  Even through the hard times. We know God has Mason in his hands, that he's protected by the Father, and that He is in control. We have had some hard times lately, Mason doesn't always take the easy path, but even through the bad times we know God is in control and feel his peace and comfort surrounding us.

   Lauren and I truly are blessed.  I could have never imagined the support we have received. We will never be able to give back all you have given through your thoughts and prayers. Just know we are so grateful for every kind word and every small prayer that goes up for Mason and this journey. Thanks you for loving my little boy as much as I do.

   Thanks for putting up with my rambling and please take a minute to listen to this song.  

josh

Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Road not taken

Mason is improving overall. His belly is looking better and he is definitely more awake. His blood gases have been great and he is currently on extubatable settings. This morning Mason was having seizure like activity. Since he basically didn't receive his medicine at all last week and his phenobarbital levels were running lower than normal they consulted neurology. Neurology decided to go ahead and put on another EEG just to check and see what exactly was going on even though it all made sense as to why he would be having what they call "break through" seizures. Infectious disease came up and confirmed that the infection growing in the cerebral spinal fluid is pseudomonas and that even though the white blood cell count had dropped from 2,000 to 500 in one day there was still a lot of the bacteria growing out so the reservoir needs to go ASAP. Since it is a foreign object in the brain it will act as a pocket for infection. They are going to remove it at some point tomorrow. Please pray that this infection will go away and that Mason won't get a fungal infection from being on all of the other antibiotics that he is on. Neurology did come up and since they have put the EEG on he has NOT had seizures so that is good news. Praise the Lord! He is breathing great and is improving in the right direction. We just have to get the infection in his head healed up. We are hoping and praying that this will happen soon. I will update when I know more as to a time for the removal of the reservoir but we do know it will be tomorrow. Hopefully we will know more about the testing of the CSF as well. Thank you all so much for your continued prayers. We truly believe that is what has got Mason through all of these difficult times but we are praying for easier times ahead.

This poem by Robert Frost has always meant so much to me since high school. I truly feel that this describes our journey with Mason. His road has not been easy but hopefully soon it will be "all the difference."

The Road Not Taken by: Robert Frost

TWO roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;         5   Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,         10   And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back.         15   I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.         20

Due date

So today is Mason's official due date. Today is the day I thought about in my head when I got pregnant trying to think ahead to what day he would be born on, when he would come, how the labor would be. I sit here today thinking, my how different all of this was from what I EVER could have imagined. Mason, you have proven to have such a will to survive and fight for your life continuously and have been surrounded and covered by prayers from the day that you were born. I could have never imagined how many people would have come together to help us and more importantly to pray for our little boy. It has been an hard yet unbelievable journey and we have been so touched by many. Thank you everyone who have prayed, reached out to us, or given money to help us during this time in our lives.

2 Samuel 22:40 You armed me with strength for battle; you humbled my adversaries before me.

Mason has been through many battles. All of them hasn't been easy. And all of you have been there every step of the way with us and for that we are thankful. This weekend was a hard one. We got the phone call on the way to the hospital yesterday that Mason's blood gases were so bad (on the jet on the maximum settings at 100% oxygen) that it wasn't likely he could live much longer if something didn't change. It was unbelievable to watch them draw off that much fluid off his belly and to visibly see him be able to breath again, them begin to immediately wean on the vent, and him wake up, bright eyed as if almost to say, "Thank you, you figured it out in time." His belly was so large that he looked pregnant.  All of his medicine, TPN, lipids and fluid had been dumping from his broviac/central line into his belly for the past week. This was the answer for what they thought on Tues. morning was a perforation. You can see this from the contrast study x-ray below how all fluid was moving into the belly.

His belly before the drew off all the fluid. A picture doesn't even do it justice.

We also found out that his blood had grown out a new bacteria that hadn't been properly covered by his antibiotics (called pseudomonas). We then found out that his CSF now had 1,000+ white blood cells which means he has meningitis again. It is pretty certain that the bacteria found in his CSF is the pseudomonas that grew out late and was untreated. The big concern today was after being on the correct antibiotics for a day, Mason's CSF white blood cells had jumped to 2,000 so the added a fourth antibiotic which crosses the blood/brain barrier better. If his white blood cell count doesn't improve by Tues. neurosurgery is going to have to pull out the reservoir so the infection doesn't pocket there. Please join us in praying that the new antibiotics resolve this enough by Tues. 

Mason's blood gases have greatly improved, he is back on the conventional vent and is breathing great. His urine output has been awesome and we are hopeful he is getting off all the additional fluid from his belly on his own. What a weekend it has been. But I hope and pray again that we are moving in the right direction. Another bump in the road. Or as we first were told another rise and fall on the roller coaster ride we have been on. It has certainly been a marathon. No training could have prepared us (even though I am certain God has been preparing us for this all of our lives). But I hope and pray that the finish line is drawing near to the day that our boy is healthy and well and ready to come home.

Rough morning

Mason was very critical this morning. His belly looked like he has swallowed a basketball. He couldn't breathe and his np said if it didn't improve then he likely wouldn't make it. We were waiting on an ultrasound to see if it looked like there was fluid in his belly before they tapped his belly to draw off fluid. They ended up pulling off 373 cc of milk like fluid. It is now suspected that what that fluid was was his TPN and lipids that was running through his broviac. The ultrasound tech also looked at his broviac which looked questionable so they are going to do a contrast study to confirm that this is what it was. Blood also just came back with another bacteria so they changed around his antibiotics. Since they have drawn off the fluid Mason's breathing is so much better and he is alert and awake. We are thankful that he has improved.

News

Mason had to be put on the jet ventilator last night. Since his breathing is being so compromised by his swollen belly they are going to have to do something. Either tap it like they do his head or go in and put a drain. Please pray for healing for our little boy.

Quick update

It has been a long day but I am going to give a quick update. This morning, Mason's nurse felt like his belly looked worse so they did some more x-rays and they looked the same. His tummy area is very swollen and red looking. This morning they did get the results of the abdominal fluid they found from the surgery and it was positive for a staph infection. Not typically what you would think of finding in his belly and the specimen that was found in blood/urine was enterobacter cloacae. So throughout the day Mason's belly has gotten bigger which has, in turn, made it more difficult for him to breath so they had to go up on his vent settings tonight. They do think he is on the right anti-biotics to cover it but it will take a few days to know for sure. Please pray for Mason to improve. He was doing so well before this. His platelets also continue to drop even after transfusion. Hopefully he will start to get better and his stomach will improve with his swelling. He is more awake today but you can tell his tummy is really bothering him. Thanks for your continued prayers.

Wake up

Today we worked on getting Mason to wake up. He is still so out of it from the anesthesia, pain medicine, and probably just from being sick. He had bad blood gases again last night so they had to go back up on his rate and pressure but a chest x-ray revealed it probably had to do mostly with tube placement. He has improved throughout today and is starting to initiate his own breaths so that is good. There are still periods where he lets the vent do all the work while he sleeps. He looked a little more swollen to me today (especially in his tummy). He also had to receive more platelets because they were 50 (after transfusion). I am betting he will probably need some more again tomorrow until he gets over this bump. So we are still about the same as we were yesterday. Hopefully tonight will be a better night and he will continue to wake up and keep moving in the right direction. We continue to appreciate your prayers for our family and our boys!

Recovering

Mason is doing ok. He had some bad blood gases last night so they went up on his rate and pressures and now that he is starting to wake up some again his gases have improved so they are starting to wean his rate and pressures. He is swollen but SO FAR he doesn't look as horrible as last time. He has had some urine output on his own which is good. Other than that he has pretty much been resting. He will wake up some from time to time and open up his eyes and move around a little but he has just been working on recovering from this infection and surgery. Nothing grew out from the cultures or abdominal fluid yesterday and we haven't gotten a specific organism or a sensitivity to know exactly but the big picture still is he has a urinary tract infection that also got into his blood stream. Please continue to pray for a speedy recovery for our sweet boy. We are still so thankful that he didn't have a perforation and we didn't have to go through all of that again.

1 Thessalonians 5: 16-18 Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus.

Update

We are thankful. The surgeon found no perforations in any area when he went in. There was some cloudy fluid in the abdominal cavity so they did flush that out and send that off for testing. We have since then learned that his urine came back positive for gram negative rods as well so the consensus is this probably started out as a urinary tract infection that moved into the blood stream. He received platelets during surgery and is provably going to get blood. He also got some hydrocortisone to help him push through and recover from surgery better. Hopefully all of this and your prayers will help. We are so thankful for this news. Please continue to pray for a speedy recovery. He is back in the vent again as he is recovering. Thank you.

Going into surgery

As I write this I can hardly believe it myself. We are on our way to the hospital. Mason is going into surgery as we speak. X-ray this morning showed free air which means another perforation. Blood cultures also came back positive for gram negative rods. Mason is very sick. Please share and pray with as many people as possible. I will update later after surgery.

Prayers needed again

They drew labs on Mason this morning and found some bands. Bands are baby white blood cells which are often an indicator of the beginning of an infection. His CRP score was also elevated (I think 256) which is really high and another indicator of inflammation. Overall, his color isn't looking good and his stomach looks large so they did an abdominal x-ray and a free air x-ray to check for a perforation. The x-ray didn't look bad but there was a diluted part of his intestine so they did stop his feeds for tonight just to be safe. The free air x-ray was fine but they are going to repeat this all in the morning. I am hoping and praying that this isn't a big deal. They started Mason back on HMF (human milk fortifier) to add additional calories. Last time they tried to add this in Mason had a bad reaction to this and got a really bad upset stomach. I am almost thinking that this is related because they have just started him back on this on Sat. and today he pooped a bunch. So we will wait and see. They are going to check labs again tomorrow morning. Please pray that this resolves into a small bump in the road. We are faithful and looking to the great Healer. Thank you for your prayers.

Mason update and the beach

Sorry for the brief break from the blog but Josh, Corbin, and I took a quick trip to the beach. Since Mason was doing well, Josh and I really wanted to take Corbin for a trip to the beach to spend some time with him and to let him experience the beach. We had a good trip...more about that later.

Mason is doing great! He is up to full feeds and is taking all of his medicine through his feeding tube and is off of TPN. That means all nutrition is coming from breastmilk. He weighed 6 lbs. 4 oz. this morning. Neuro did come and tap him this morning and took out 12 cc but if I am correct that was the first time since Tues. They have added several medicines to help with jaundice (from being on TPN for so long) and they can now add supplements as well (vitamin D and HMF). He is off of CPAP and is just on nasal canula. We sure missed him while we were gone but checked in on him quite regularly. Corbin talked and talked about Mason going to the beach, jumping in the waves, seeing the fishies. He loves his brother so much and it is so neat to see.



Our beach trip was great. Corbin was a little timid about the beach the first day but by today he LOVED it! He and his Daddy had a blast together building sandcastles and playing in the waves.

He loved to make sandcastles!

The first day we just stayed at the beach and then went to Broadway at the beach for dinner. Corbin was beat! The waves, sun, and sand took it out of him. Here is a picture of him at dinner barely able to hold his head up.

The next day we decided to go to the aquarium and see some fish. We had a great time and Corbin's favorite thing to do there was petting a sting ray. Below are several pics:

He sure is brave!

That night we went to Chesapeake House for dinner. This restaurant was a tradition that we went to with my Nana and Papaw every time we went to Myrtle Beach. It was nice to be able to share this with Corbin. They have a pond out back with turtles and alligators. I remember this so well growing up and hope our boys can share in this tradition as well. 

Searching for alligators.

This morning we got up early and went back to the beach. Corbin is officially in love. He kept talking about jumping in the waves and we found his all time favorite thing today...

the baby swimming pool.

He played in this for quite a long time splashing and splashing. We had such a great time with this sweet boy and look forward to having our whole family at the beach next year. It was such a blessing to be able to get away and spend some time with Corbin. We sure do love both of our sweet boys. 

Corbin and the "wabes" as he called them.

Corbin said he was cold and wanted Daddy to hold him.

Mason we missed you but look forward to our first beach trip together next year!

Growing boy

We continue to be blessed with good days! Mason is tolerating his increase in feeds well and he is up to 10 cc per hour. He is now at a pressure of 4 on Cpap and is doing great on that as well. He weighed 5 lbs 12 oz this morning and looks so much longer then he used to. We are so thankful that he is doing so much better. He is spoiled already and loves to be held which is fine by me. We haven't heard from neuro as far as their plan for the shunt surgery...still praying hard that we can bypass that one. Can't wait to get this sweet boy home soon!

Good days

This little boy was wide awake when I got there this morning.  He stayed awake a little bit while I was holding him but then he snuggled up and went fast asleep. He loves to snuggle! He is still doing great. His feeds are up to 9 ml/hour and he is tolerating it well. They did a cranial ultrasound yesterday and it was pretty much the same as last week. Neuro did not tap his head today. He has officially graduated to newborn clothes. We are so thankful and so very proud of how good he is doing. Everyone's prayers are working because he is finally getting better! Thank you so much for your continued prayers for healing. We still have the shunt surgery ahead of us but we aren't exactly sure when it might be. Probably within the next couple of weeks. Below is a short clip of Mason in action (while he is awake). The boy needs his rest most of the time!

Sweet boy

This sweet little boy is such a blessing. He is doing great. Not many changes today except continuing to  increase his feeds every 12 hours and weaning his hydrocortisone. He is tolerating his feeds with minimal residuals (usually around 2-3) and is doing well. His head felt full and neurosurgery did come and tap 12 cc off today so atleast he was able to go a couple of days instead of having to tap every single day. For that we will be thankful. He sure loves to snuggle and passed out in my arms today and he loves listening to his music. He weighs around 5 lbs. 10 oz. and for the most part his edema is gone. He is getting stronger every day and for that we feel so blessed (15 weeks old tonight)!

Counting our blessings

Mason had another great day! They did labwork today for the first time since Friday (I think) and everything looked good. They changed all of his medicines to be given by mouth and they are going to increase his feeds every 12 hours. The best news we got was that neurosurgery came to tap his reservoir and his head still felt good so they just will check him again tomorrow. It would be such a blessing if he didn't have to have the shunt surgery! We are so proud of our little boy doing so well and we are so very thankful! Corbin came to see his brother and while I was holding him Mason started making little noises. Corbin said "What's that?" I guess he has never heard his brother make any noises. We continue to thank all of you for your prayers...they are working and God is listening. He can do the impossible...He can make all things possible.

We are also overwhelmed with everyone that has reached out or given money towards helping us financially. Thanks to everyone who has given already and who has sent us donations through the mail as well. We are very touched by your kindness. We also want to thank Jen again for taking time to set up the site (www.indiegogo.com/babymason). It really means a lot and again thank you to everyone who has already contributed. You are a blessing.

Treasures

Hold your loved ones and children a little closer tonight. Today we were reminded how sweet life is and how we should treasure every moment. Mason had a NICU "brother" named Jeyden. Jeyden and his family were in the same pod when we arrived and were there the majority of the time together. A few weeks ago that joyous day came for Jeyden...he was able to go home. We were so excited for him and his family. His mother and I promised that when they got older we would have playdates. Today we found out that he had passed away of pneumonia. Please say a prayer for him and his family. These babies are so sensitive to each and every thing and it can take them away in seconds. It really makes us scared. Life is so precious...treasure every moment and thank God for each other.

We are so thankful that our little boy is doing so well. We got good news today that neurosurgery didn't need to pull fluid off of his head and really didn't need to yesterday (they only pulled 5cc off). Mason is going to get moved to an every other day schedule but we spoke with a resident and he said  that the duct is probably opening back up and starting to draining naturally. Time will tell. We pray that this would be the case because that might mean no shunt surgery but we will take it a day at a time. He is tolerating his feeds (increased to 4 today) and they also decreased his CPAP pressure to 5 and he is doing well with that. To God be the glory. None of this would be possible without him.

1 Peter 5:10-11

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast. To Him be the power for ever and ever. Amen.

Big boy bed

So today Mason graduated to a crib! He has been doing well with no heat so this was the next step. Overnight he had some residuals on his feeds and they it was necessary to stop them so that he could catch up. Since his lower stomach/bowel area hadn't been used pretty much all of his life it is going to have to get used to working. Other than that he is doing great. They left his feeds where they were and decreased his lasix to 2 x a day and decreased his hydrocortisone. He was being a good boy and continues to love to lay on his belly. It was another good day for our family and we rejoice!