Mason's surgery went well. He has an Evd in place to help drain the CSF and relieve the pressure. His dr. is hoping he will be strong enough in 2 weeks to place in a shunt for a more permanent fix to this problem. The infectious disease team is going to keep him on 4 more weeks of antibiotics and continue to test the CSF that drains out of his head for infection. Before they take him off the antibiotics they will have an MRI to make sure all if this has resolved. The procedure ended up being done at bedside instead of down in the operating room thanks to the dr. It was looking like we were going to have to wait until tomorrow (due to being on lockdown 2 times today here at the hospital) but he came up and said if we were ok doing it at bedside then he was fine with it. They were calling him down to the OR waiting for him immediately after he finished so I really appreciate him doing this today. Please pray that this will help Mason and heal him.
Just wanted to update that Mason will be having surgery tomorrow morning between 10:00 and 11:00 to put in an external ventricular drain (EVD) to help draw off CSF and relieve pressure off of Mason's brain. Please pray for wisdom and guidance for the dr.'s performing the procedure and that this is successful and doesn't get clogged up with infection. Will update as soon as we know something. Thanks!
Yesterday was a semi non eventful day for Mason. He did have to get some blood and by the end of the day his head was pretty tight and up to 31 cm. Neurosurgery was called and they came and pulled 20 ml off of his head in 3 different places, trying to pull off in the infected area. Good news is the labs came back that showed white blood cells were down to 5,000. Bad news is this morning his head was right back to feeling full again and his head was up .5 cm just from last night after he pulled the csf off. Infectious disease team came by and said that they may feel comfortable with a surgery since the white blood cell count is down but will continue to discuss him at their conference tomorrow. Our dr said they would either put in a reservoir or something like a bag (I can't remember the name of it right now) that would allow the infection to drain out of his head and clear up. So basically we will wait for a few more days to see what they say and what all Mason's team of dr.'s feel comfortable with. No infection has ever been seen under a microscope and nothing has grown out so this all continues to leave them puzzled. Please pray for guidance and wisdom of the medical team here to figure out the right thing to do and to be successful.
God continues to be with us even though this all is hard. Yesterday at church we sang a song that really spoke to me by Matt Redmond. I have talked before about how I feel like we are walking through the valley right now but I hold on to the hope and to God's promise that there will be a light at the end of all of this dark time. Please continue to pray for healing for Mason. I really am certain that God has a great plan for his little life. We just have to keep passing through the storms right now and not let go as our heart holds on.
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
Yesterday was a crazy day! It is hard to even explain. They decided that they needed to do an MRI of Mason's head to determine if there was an abscess or something specific going on in there that was causing the high WBC count of 20,000. So it was scheduled and they were going to try to do it without extubating. Well, MRI called and said that he couldn't go through their machines with Cpap. So plan 2 was to try to see if Mason could just handle plain nasal canula and oxygen only (remember he had only been extubated on Sunday) and they scheduled the MRI at 4:30. So, I decided to go home and see Corbin for a bit and then I would go back to the hospital to be with Mason during his MRI. Well, I was almost home when I got a call from the hospital...Mason was fine and doing well on nasal canula BUT they had moved up MRI and it was going to be in an hour. Anesthesia would be in there in give him some sedative because the MRI machines are very loud and in order to get a good picture he needed to be still. So I turned around on I-40 and began to make arrangements for Corbin. I got to the hospital, met with anesthesiology, gave permission, and we headed on our LONG way to MRI. Mason did pretty good but through all of the commotion and movement was getting tired. We got to MRI and I signed permission and they came to tell me that they really felt they needed to intubate Mason because he was getting tired on just the canula through all the transport. I said that was fine go ahead and do it and they reassured me he should be able to be extubated by tomorrow morning once he recovered from the sedatives. He would have to have more sedation since he was back on the vent. So I gave Mason a kiss and headed back to the NICU since I couldn't be in the room during the MRI. Well, about the time I got back to the NICU I hear over the intercom "Code Red, MRI building, first floor." So I go back over there to see fire trucks in front of the MRI building and all the patients in the parking lot but no Mason. Some of the people recognize me and say...oh, they had to take Mason back to the NICU since the building had to be evacuated. Turns out they were getting ready to put him in the MRI when the fire alarm went off. But now he was back in the NICU reintubated for a procedure that he hadn't been able to have.
So, back to the NICU I went and Mason was doing well. We were waiting to hear if they were going to transport him again to MRI since they had been given an all clear on the building. Anesthesia came and said we were going to head back down but this time to a closer MRI in order to save Mason another LONG trip. So we went back down and Mason tolerated everything well and we were able to get the results which showed ventriculitis on the right side of his brain. We waited last night to see if we were going to have to go straight into surgery but how they are going to treat it is to pull the infected fluid off of his brain as needed. If they tried to surgery at this point in time and put in a shunt or reservoir to drain off the infection then the infection would pool and "grab" onto it and then they would have to go back in and pull it (shunt) back out which would be WAY more invasive. So far nothing has grown out yet but our dr.'s said neurosurgery must have pulled out right in the pocket of infection which is why they saw the huge jump in white blood cell numbers. So that is the plan of attack for now. Mason was NOT happy that he had the tube back down his throat and was making it known. He kept moving his head and shaking it as if he was trying to get it out this morning. He was also making upset faces. Here is what he did to show his disgust:
I have to cover my face since you had to put me back on the vent. This is what he did...promise it was not staged and he grabbed his blanket up and did it himself. Oh, and in protest while they were reintubating yesterday he decided to pull out his IV.
While we were there they did go ahead and extubate him and put him on Cpap this time since he had done so well on everything yesterday. He was a much more happier boy after that. Now it seems inevitable that we will never know exactly what has happened with Mason...was it menigitis and ventriculitis? Just ventriculitis? From the ecoli infection? Who knows...but God has Mason in his control and He obviously has a great plan for his little life. And that is all we need to know.
Much happier after I got extubated. Don't have to hide my face now!
(Sidenote: Yes, Mason does have a bald spot on his head where his hair got pulled on from an IV and tape. )
Ok not having surgery tonight but going to continue to drain off fluid as they have been doing. It has been one of those days and I feel like doors have been slammed in my face constantly. The devil has been at work. But we know and trust that our son can be healed. I will post more details later but need some sleep!
MRI showed that Mason has an abscess in the right side of his brain. We haven't heard much yet but they are calling neurosurgery to see if they want immediate action. Not sure what all of this means but please pray. May have surgery tonight.
Well, Mason had a down day...kind of. This morning neurosurgery decided to come in and go ahead and pull off his CSF to relieve some of the pressure. He pulled off 8ml this time as compared to the 16 last time. What was concerning is that the nurse said this fluid looked better than last time (as in more clear). Apparently when you have a really bad infection your CSF changes from clear to cloudy. Well, they are saying that last time it was more cloudy and this time it looked better but I talked to Mason's nurse the day he had his first CSF tap and she said it looked normal. So I am not sure who to believe at this point. Anyway, they were able to send it off and run more labs on it. Another concerning thing is last time when he had his lumbar puncture (LP) to initially diagnose his meningitis he came back with 1650 white blood cells which was a high enough number to diagnose the meningitis. Well, today, after 3 weeks of antibiotics, Mason's white blood cell count in his CSF was 20,000. Cause for concern. Of course, Mason is looking just fine and has certainly been doing well but needless to say the Dr.'s contacted the infectious disease dr.'s today to see what they wanted to do. So, as of this afternoon, Mason is now on meropenum, vancomycin, and anthro-b covering for bacterial AND fungal again. They are also doing more cultures and tests to see if this will grow out anything this time. Everything else is going well. The eye dr. came back and said his eyes were surprisingly looking A LOT better. Platelets came up again to 79 and white blood cells in the blood were down even lower and the CRP was low as well. They are going to try to get Mason down for a MRI tomorrow which worries me a little bit. I continue to hope he can tolerate all of this. So, for the majority of the day, he had a down restful day but tomorrow may be another story.
Well, this momma has had a down day too. I have truly felt God's peace throughout all of this and through all the words of encouragement and notes and messages that I have gotten from people. I still feel it but I will have to say I am very bummed. I am ready for things to get better and I am so tired of seeing my baby suffer. It breaks my heart and makes me hurt. I continue to try to stay positive. I know God has great plans for Mason because he is here for a reason. Throughout all of this, there have been numerous times when Mason has been super sick that they will check his heart to make sure it is ok and functioning properly or that the meningitis infection hasn't gotten into the valves. Well, now 2 different cardiologist have told me his heart looks "great...It is very strong." And he didn't have to tell me because I know my child. His strong heart it what has gotten him through all of this. I love him so much and I am so ready for him to get better. I trust in God but sometimes this is so hard. I am ready for my little boy to be healed. One of my facebook friend's shared this quote from Joel Osteen today and I feel like it spoke volumes to me and about Mason:
"God will not let you go through more than you can handle. If you have a big challenge today, that just means you have a big destiny."
Mason's eye procedure went well today. The dr. will monitor him within the next couple of days for infection and he will also receive some eye drops. He tolerated being on Cpap during the procedure so that the dr. could actually get to his eyes but afterwards went back on Sipap. So that was all good and tonight they weaned his rate down to 15. He seems to take it all in stride. The neurosurgeon did come up and evaluate him tonight so I guess we will see what they want to do. I am hoping and praying they go ahead and do something before Mason becomes symptomatic. Mason tends to mask all symptoms when he is sick until it is almost too late and I just don't want that to happen again. Dr. Zeller also came by and said that they could go up on his feeds to 3.3 again so that is all good. He keeps on growing and weighed in at 3 lbs. 7 oz. this morning. We sure do love both of our sweet boys so much. It is so sweet when we are saying our bedtime prayers, Corbin will say I love Daddy, I love Mason, I love Mommy, I love Corbin. We are very blessed.
Mason's eye injection is going to happen at 2 this afternoon. Please also pray for his head because it feels more full but he isn't symptomatic so neurosurgery isn't going to do an intervention. Mason had an episode of bradycardia (slowing of heart rate) down to 77 so we are wondering if that will get something done. I will update once I know something.
More prayers are needed because Mason is having a procedure tomorrow for his eyes and the ROP. The surgeon feels that he is at the point where he needs an intervention and what they are going to do is inject a cancer drug, Avastin into his eye. This is a less invasive procedure than the laser surgery and has been shown to be more effective (in recent research that has been done). It should be happening in the afternoon and I will meet with him to sign the paperwork and we should be good to go. He will have to be followed for quite some time to make sure that he doesn't develop ROP again but we are so thankful for a different procedure that isn't a "surgery" and doesn't require Mason to go back on the vent!
As for other news, Mason's platelets finally went up on their own! They went from 64 to 69 so that is good and his white blood cells decreased which is also a good thing. Dr. Zeller (Mason's surgeon) did decrease his feeds down to 3 because he had had increased output in his ostomy bag and she just wants to be cautious for right now. He is still doing well of Sipap and they decreased his rate down to 25 this evening while Josh was up there and he tolerated that just fine. He also got his cranial ultrasound and the results in the same day which show that the clots in his brain are getting smaller and there is a slight increase in cerebral spinal fluid. Neurosurgery is continuing to follow him but if Mason does get symptomatic then they will call them to do an intervention. Symptoms that would alert them are mainly lowering heart rate. I continue to pray that God will completely heal Mason's brain and resolve this without any intervention. We continue to thank all of you out there for following/sharing Mason's story and for praying for him and for our family. It means more than you will ever know.
Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.
Mason is still doing great on Sipap thank goodness! I got to hold him for a long time today without having to worry about his tube being taped to me. It was nice to be free! We are so thankful to have jumped over this hurdle for now. In other news, Mason had another eye exam this week and there is cause for concern. After the exam he said he wanted someone else to look at him so that he could have a second opinion. Mason is at a very high risk for retinopathy of prematurity which is where the retina is less developed and only partially covered by blood vessels. Because he has been getting supplemental oxygen since birth, this can cause damage to the rest of the partially formed blood vessels and if not treated can lead to blindness. The other dr. is coming tomorrow morning so we should get more information after that. I pray that we will not have to have laser surgery but thankfully they do have a treatment.
Mason's platelets had dropped some today and they will check them again. There were also several "bands" presents which are young white blood cells which could point to an infection brewing. I am praying that he does not have another infection since he is on a heavy duty antibiotic. All of his other labwork looked great. They continue to monitor his head. He will have his cranial ultrasound tomorrow but it seems that his fluid has moved to one specific place on his head which is strange. Neurosurgery continues to follow him but he seems to be doing ok for now. They do think his weight is appropriate for now and he just has a little bit of fluid still left so right now he is weighing in at 3 lbs. 6 oz. They started him back on his daily diuretics and increased his feeds to 3.3. He still has a lot going on for sure but we are thankful for his progress so far!
So far Mason's extubation has been a success! It did take him a little bit of time trying to get used to the pressure and air going through his nose and he went cross eyed looking at the mask trying to figure it out. He also put his hand right on the mask as if he was trying to figure out what in the world was on his face. He finally went back to sleep once we wrapped him back up. After an hour and half, they did a blood gas on him and it was good so they left everything the same. He is on Sipap right now with a rate of 30 and was on 34-38% on his oxygen levels. Only other changes today is he is done with hydrocortisone and they increased his feeds to 3 ml an hour. Thank you Lord for prayers and for this time around being a success. So far he is tolerating it just fine! He is 2 months old tonight.
Daddy got some pictures in between of my sweet face.
Today was the first day Mason got to wear clothes. His "suitemate" brother, Jaden had given him a onesie that he had grown out of and today when we got there, Mason was wearing it. He looked like a cutie and it made him look all "grown up". He had lost around 3 oz. and is down to about 3 lbs. and 5 oz. which is heading in the right direction. Mason continues to tolerate his feeds and is doing well on his vent settings. They decreased his rate to 15 and weaned his hydrocortisone some more. His platelets, after tranfusion yesterday were in the 80's. Hopefully he will start to make some of his own. They are continuing to consider extubating but didn't do it today. Please pray that this time it will be successful, whenever they decide to do it. His head continues to feel full so please pray that the duct will unclog itself. Today is the first time he started to look like a little baby again. Corbin came up and got to visit his baby brother for a little bit. Below is a picture of all of us together. Thank you for your continued prayers and support.
Today I am thankful. Thankful that Mason is alive and he has made it thusfar. Thankful that through all of his procedures they have known what to do and that there HAS been a treatment. And that his conditions have responded to the treatment that they have given him. Today, a baby in the NICU passed away. He was full term and when he first came in I wondered what he was there for. Most of the babies that come in are very small or need immediate surgery and I could tell he was big compared to the others. I figured he would be there for a short stay and in a way I was right. We spoke with his parents and learned that he had a condition that wasn't treatable. He would be going home but to his home in heaven. As I sat for the week that he was in there and watched his parents hold him, family come and grieve, the baby's brother and sister come in and take family pictures with him (they were about 4 and 5 years old) it made me really start to be think. Even though Mason was critically ill he was able to be treated. And thanks to the Lord, he responded to treatment. These people didn't have that option. There was no treatment. And today their baby did go home. But not in their arms...in the arms of Jesus. It really makes you thankful for what you have even though it may not be what you had "planned." Please join me in praying for comfort for this family. They knew nothing of this condition until after the baby was born and even though they had a week to "prepare", I am certain there is no way that you can prepare your heart and soul for the loss of a child.
Mason had a pretty good day. His platelets had dropped again to 32 so they went ahead and tranfused. He really needs to make some of his own and I hope and pray that his body will kick in and do its job but I have to remember that it is still hard at work fighting this infection. Even though he is on antibiotics, this is a very severe infection but hopefully his platelets will kick in soon. In other news, his head feels full again. His nurse said yesterday it was pretty tight and tense feeling and it does feel a little more soft today but full, nevertheless (measured 28 cm). Please pray that this resolves itself and that the duct will become unclogged. But then again, I am thankful for treatment if this does become necessary. God always has a plan and I know he has a special plan for Mason. They increased his feeds to 2.6 cc an hour (I think, it might be 2.4) and he seems to be doing well with that. They discussed extubation and did an MVT but since he has so much leakage they couldn't get an actual score but he did well. They are going to wait another day and continue to watch his head. They may discuss extubating him tomorrow. They decreased his rate down to 15 and the rest of his pressures are down as low as he can go. Please pray that if they do extubate that it will be successful this time around. They gave 2 doses of lasix today to try to continue getting the fluid off. He was up 10 grams today so he is still around 3 pounds 9 ounces. Still carrying almost a pound of extra fluid which could also inhibit his breathing if they extubate. He is looking better though and isn't as "puffy" looking. I have been down today but trying to remember that God is with us through all of this. Sometimes I just want Mason to be home and want everything to ok. But then I gain some "perspective" and remember that through all of this, God has a plan for Mason's life. He has his little body in the palm of his hands and He is with us every step of the way.
Sleep well sweet boy. Daddy, Mommy, and Corbin love you very much.
Mason's procedure (to pull off the CSF) happened yesterday at around 4:00 p.m. They ended up pulling off 16 cc of CSF (the neurosurgeon told Mason's nurse that the most they will pull is 20 cc) so I guess it was successful. Please pray that this will work and that another procedure won't be necessary. Today, he looked a little less swollen. He had lost 10 grams and still has a lot more to go since he gained over a pound of fluid when his body went into shock. He is still on extubatable settings for his vent but they are going to wait a little bit longer after his brain procedure because sometimes after this is done they will often having a little difficulty breathing. They did start feeds back I think at 1.4 cc per hour and we called this afternoon and he did have some residuals. Hopefully his body will start kicking back into gear. They continued to wean his hydrocortisone by 20% and they did give him some more lasix to try to get rid of some of that fluid. We like low key days where Mason can just rest and grow. Thank you everyone for your continued prayers for our family. We need more "growing" days!
So, I come before you again and ask for more prayers. Yesterdays cranial ultrasound showed enlarged ventricles which in turn means an increase in CSF (cerebral spinal fluid). A significant enough amount where now we need to do intervention. Today neurosurgery should be coming in to consult but Mason's dr. said they would do a procedure where they would draw off fluid (which is a cerebral spinal fluid tap) from his brain. As of now Mason is not symptomatic so if they catch it early enough then that is a good thing. The increase in fluid could be from when Mason's body went into septic shock and all the fluid pulled out and ended up in the outer part of his body (as well as his brain) or it could be from the duct (where the CSF flows from the brain to the spinal cord) being clogged. Either way intervention is necessary. We are hoping this will help his problem. If this increase in fluid happens again then they will put a more permanent fix in called a reservoir (which is inserted into the brain) and then they can drain his fluid off daily. Then, when he gets big enough, he will have to have surgery to put in a shunt. Please pray that this procedure works.
As for everything else Mason is doing pretty good. They continue to wean off his hydrocortisone and the infectious disease team decided to take him off all antibiotics except for the meropenum. He will receive this for 6 weeks. Platelets did drop slightly to 82 but his dr. is not concerned. They will recheck again tomorrow. Whenever the CSF is resolved, Mason is probably ready to resume feeds and be extubated. He is still very swollen and puffy but he is hanging in there.
I stop and think that I don't know how I would be getting through this without God. It has been so surreal the number of interactions that we have with Him and reminders that he is here with us every step of the way. Yesterday as I was on my way to the hospital, I turned on KLOVE and Michael W. Smith's song "Healing Rain" was on. It really spoke to me and gave me chills. I felt like God was speaking to me that he was going to heal Mason and I continue to be faithful in asking for this. So today, I ask you to join me in praying for rain for Mason. Pray for God's healing rain.
Mason continues to do well. He lost about 2 oz. last night and is starting to loose some of his puffiness. His vital signs have continued to do well so they weaned his hydrocortisone by 20 percent again. Last night he had some jerky movements so they moved his cranial ultrasound up to today so they could have a look. The only other concern is his platelets have dropped to 95. His dr. was going to start his feeds back today but wants to wait because of this. They will recheck platelets again in the morning.
His vent settings are minimal and he is doing really well. He is to the point where they could consider extubating but they want to continue to watch his platelet count closely. Please pray that Mason's platelet count remains steady or increases. Platelets are "eaten" when your body has an infection and we really hope that his antibiotics are working. Everything has to be watched so closely right now to continue his progress. But we are going to keep the faith that he can continue to pull through this. Thanks for your continued prayers and support.
John 14:1 Don't let your hearts be troubled. Trust in God, and trust also in me.
So they are pretty comfortable saying that Mason is "back in the ball game". All I can say is all praise be to the Almighty! His blood gases have been fabulous and they have weaned his rate and pressures on the vent. His blood pressures have been stable and he is off the dopamine. They are going to wean his hydrocortisone by 20 percent today. All of his labs looked good. Platelets continue to be up...I think last night they were 156 and this morning they were in the 130's. Only thing that was low was his albumin and he is going to get some of that today his dr. said that that would also help him pull some of the fluid back into the blood because he is really puffy and swollen.
The other thing that encourages me that I found out it the began giving him the miripinum (antibiotic that fights off bacteria) prior to the lumbar puncture that was done on Friday night. That puncture is what showed the LARGE number of white blood cells in his cerebral spinal fluid. It wasn't until after the puncture that he was given the fungal antibiotic. All cultures continue to come back negative and we will probably never know if it was bacterial or fungal but atleast you would think that after he has already been in 3 antibiotics that target bacteria it should have helped some. But then again I am not a dr.
I want to continue to thank all of you for your prayers and for following our story. Your prayers and God's healing hand is what is getting us through all of this. Please continue to cover our little Mason in prayers of healing.
Well, I think we have turned the corner. Mason's blood pressure has stabilized and they have been able to wean the dopamine from the highest dose (20) to 7.5. Last night his kidneys started working again and he began to pee and his blood pressure was stable enough that they started giving him some lasix to help him get rid of some of the extra fluid. He is very swollen and is carrying over a pound of extra weight. His blood work this morning showed nothing of concern so no transfusions as of yet. In the past 48 hours he has received 2 blood transfusions, 4 platelet transfusions, 2 albumins, and 2 bolus to help him. So far nothing has grown out in the cultures but if it is bacterial they really don't expect it to since he was on antibiotics previously.
Please continue to pray. The nurse yesterday told us that is he does make it through this that he will likely have no quality of life. Again the odds are stacked against him with the brain bleeds and now meningitis. But we don't believe in odds. And if it is God's plan, I pray that Mason will be completely healed. Please join me in continuing to pray for healing and full recovery for our boy.
Praise the Lord, O my soul and forget not all his benefits. Who forgives all your sins. And heals all your diseases.
I don't know how to write this post or what to say or how to say it so here it goes. Mason is very sick. Everything in his body has shut down to try to fight this infection. The antibiotics he was on are super strong but he still got this infection. They have added another antibiotic as well as medicine if this meningitis were to have come from a fungus. They are suspecting bacterial meningitis based on his lab numbers.
Right now he is fighting for his life. They are trying to get him through this but said it will be very difficult. It is so hard to think that he has made it through so much for it to end now. But God still has a plan. We may not know it or understand it right now but I am still trying to give Him thanks through everything even though it is really hard right now.
Mason's blood pressure was really low so they had to start him on blood pressure medicine. His body right now is in septic shock and all of his fluid has pulled out of his blood and is in his tissue so he is really swollen. His heart rate is very high. They are going to give him more blood, platelets, albumin, and hydrocortisone to try to help him. Right now his urine output has decreased because his body is in shock but they don't want to give him lasix. The problem is if he holds on to his urine too and with all of this extra fluid his kidneys might shut down and he isn't a candidate for dialysis.
This is all very hard news to hear and for us to comprehend. We love Mason very much and I pray that he will survive and overcome all of this. I pray that he will be our miracle baby and amaze the doctors. Please join us in praying for our baby. We need many many prayers now.
Well, there is so much to say and tell but we just got the news and right now I am too tired to go in depth. Mason has meningitis. This is why they couldn't find it in blood or urine. They did a lumbar puncture tonight and his white blood cell count was 1650. Please pray that he will be ok. It has been a rough day but atleast we have an answer now. But I still have faith that he can be healed. Lord please heal his little body.
Well, today we had to take a little step back in feedings. Last night, Mason had a 7 cc residual that he was having difficulty digesting. Once he digested it, he ended up "dumping" it in his bag and basically he had an upset stomach. In the middle of the night they ended up taking the human milk fortifier away and the residuals went away but they wanted to give his tummy a break so they decreased feeds to 2 mL an hour. They will continue to increase his feeds again if everything seems to go ok. Upon examination this morning his fotanelles (soft spot in his head) felt more full than normal which could indicate that he has increased cerebral spinal fluid. His head also measured a full 1 cm larger than the day before. Also not the greatest news. After the cranial ultrasound they called me to give me the results. The good news is the blood on the right side of the brain seems to be absorbing. She said that is what they want it to do. Bad news, there is or seems to be an increase in cerebral spinal fluid. Not enough yet for them to be concerned about but they are noting it and will follow with neurosurgery. So what this could mean is if it continues to increase then they might eventually have to do surgery to insert a shunt to help drain the fluid off of his brain. The NP said that this is all totally expected with a child that has a grade 4 and grade 3 bleed (he has a grade 3 on the left side and grade 4 on the right side). So as said before, we would appreciate your continued prayers. I still believe that he can be healed. Thanks for all of your words of encouragement.
Please pray for Mason. Today not really anything eventful happened. Continue with feeds as the previous day because he had increased output from his ostomy but did have slight weight gain. Will recheck tomorrow. Continue on antibiotics. She did show me his weight and head circumferences on a growth chart and they were both around the 50th percentile and growing at a steady pace which is good. Cranial ultrasound scheduled for tomorrow.
Please pray that his body will be healed. His lungs, his heart, his brain, his complete body. The nurse showed me the results of last weeks cranial ultrasound. They always mention these in rounds and basically say they are unchanged and continue follow up each week. Well, when we looked at the results from last week it mentioned that there looked like more bleeding on the right side than the previous week. This was never mentioned to me last week so I am not sure. He is going to have another one done tomorrow so we will see the results from that. Usually, brain bleeds occur the first 3 days of life. When Mason had his first one it was bad. He was dying. They were having to revive him and keep him living. Well, Mason hasn't given us any indication like this recently. He has been stable (thank the Lord). So it is hard to believe that there has been an increase. We found out tonight that the radiologist reads these and inputs their information (not a neurologist). So hopefully they are wrong. I sure hope so. Knowing everything I guess the bleed in the brain is what scares me that most about Mason's condition. He is our child no matter what. God has entrusted him into our care and we love him.
Not sure if this feels like the quickest 7 weeks or longest 7 weeks of my life. It is hard to say. Mason is doing ok today. Still not sure if he has an infection or what...all cultures continue to come back negative. The only thing they haven't really ruled out is his lungs but haven't been very concerned about it because he is on minimal settings. They tried to do another MVT today to see if he was ready to extubate and he couldn't handle the test again today. They tend to think he is weak due to some kind of infection which is causing him to not be able to do well but also talked about the possibility of steroids to help him get off the vent. They decided to keep him on antibiotics for a total of 7 days and then think about steroids. I am praying he is off the vent by then. They decided to not increase his feeds today but instead begin giving him human milk fortifier. This is a protein that helps increase his calories and hopefully will help him continue to gain weight. He was around 2 lbs. 9 oz. today.
Josh went up this afternoon and Mason's respiration rate was really high. Like 122 breaths per minute. They checked to see if he was hot and he wasn't. This is typically why he might have increased respiration but I don't think his breaths per minute has gotten that high before. The respiratory therapist came in and messed around with the settings and found that if he took away the pressure that assisted Mason when taking a breath then his breaths would return to a normal breath per minute rate. Basically, the problem could be his vent tube is too small now and he needs a bigger one or Mason prefers to breath without the extra support provided by the pressure. Hard to explain but that is what is going on now. Please pray that he will be able to come off the vent soon. And that he will continue to gain weight and tolerate his feeds. I know that he will eventually be able to come off the vent but the longer he is on it the more side effects he could have from that. It is hard to believe that just 7 weeks ago was a new beginning with our new little (emphasis on little) baby coming into the world. He has definitely changed our lives and I know he and his story has touched a lot of peoples lives. One can never know a reason why something happens but I do know that we are going through this for a purpose and that one day we will look back on this and be able to understand. And then we will have both little boys at home. I know they say that the transition from 1 to 2 children is hard but this sure has been harder than I could possibly imagine! I keep the faith and know that it will all pay off in the end!
Hard to believe that Mason is 30 weeks...only 10 weeks away from my actual due date. And that he is already here. I keep getting reminded of the wimpy white boy syndrome...I think he is the only white boy in the NICU at Brenner's (atleast in our "pod"). He is one tough cookie.
It was a quiet day for Mason. No labs to look at so they continued on with the antibiotics and will check today to see if they should keep giving them. His blood gases have been good so they have kept his vent settings the same (since they are minimal and they have no where to wean). They did another MVT and had to discontinue again because his respiration rate increased so high. PT and OT are working with him and they say his muscles feel good and that he is tolerating treatment. I got to hold him today and he enjoyed being snuggled up close to Mommy and fell asleep. They also increased his feedings again to 3.4. He is doing well and still not looking "sick". We sure love this little boy!
Mason continues to do well. He continues to act strong and keep fighting through whatever comes his way. They rechecked his CRP today and it had come down some to 169 and his platelets had gone up to 80. So the antiobiotics are working towards whatever is going on...both sets of blood cultures have come back negative so far. Atleast he isn't acting sick which is a blessing. They kept his feeds the same and he continues to weigh in around 2 lbs. 7 oz. They are having trouble with his ostomy bag since he has grown so much so he might have to have a procedure done to fix it. Right now they are going to watch it and hope that it can stay like it is until he has his second "reconnective" surgery. They were able to go down to minimal pressures and rates today on his vent settings and he has handled that. They tried to do 2 different MVT today but he couldn't tolerate them. About 5 minutes in they had to discontinue because he destated so bad. Just not ready yet. Please pray that he will continue to heal and that the next time they try to extubate it will be successful! They are continuing his antiobiotics and added another diuretic to help him with his lungs. Hopefully we will get there soon!
I like to sleep some so that I can keep on growing.
So Mason continues to make improvement towards his vent settings. He has continued to have some blood gases that were good enough where they could wean his rate and his pressure. He has tolerated it which is good news. He continues to look healthy and be his normal fiesty self. He certainly doesn't look sick but his lab work on the other hand isn't looking too good...
Yesterday, his CRP was elevated (as I mentioned in my last post). It was 212. Today they redrew it and it was 222. Initially, we were hoping it was a lab error but apparently it is not. Also, today platelets were down to in the 40's where earlier this week they were 136. Another not so great sign. They redrew blood cultures today and started him on vancomycin and gentamycin. Nothing else is pointing to infection so far other than these numbers. So, if it is infection then the good news is they caught it early. So far, yesterdays cultures have come back negative but they could come back positive at anytime so right now we are waiting and watching. No news is good news. We continue to know that God has Mason, no matter what is going on, in the palm of his hand and will be with us. Please continue to pray for healing for our little guy. He continues to amaze us and those around us daily.
Romans 8:18 For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.
More roller coaster today...When I got there, Mason's nurse told me that he had already had a busy morning. His CRP had come back really high (normal is around 10 and his was 212) which is an indicator of inflammation/infection. This was really the only lab value that was a red flag and clinically he was his usual spunky self. They went ahead and drew blood and urine cultures to check but chose not to put him on antibiotic because he didn't look sick. They will continue to watch this very closely.
Another thing was his weight was down today (2 lb. 5 oz from 2 lb. 6 oz. the day before) and his ostomy output was up (has been averaging 15-19 and today was 29) so they were concerned about his feeds so they decreased them back down to 2.6 mL/hour from 3. Another thing they are going to watch. And his x-rays for his wrist came back with changes showing Rickets' so they are going to supplement him with calcium and phosperous. She said the best things for him will be full feeds and that he will grow out of it. They will also supplement him with Vitamin D and everyone who works with him and us have to be extra careful because he is prone to fractures.
Cranial ultrasound showed an increase in fluid on the left hemisphere. They continue to watch this very closely to check for hydrocephalus which would mean surgery to implant a shunt in him so that the extra fluid could drain. Please continue to pray. It is hard not to get discouraged on days like today with everything that has gone on. But I know that Mason can be completely healed and overall he isn't doing too bad. He certainly didn't look sick so I am hoping that all of the cultures will come back negative and that it was another lab error. I continue to be reminded how easy this isn't and long for the day when I look back on this and it is just a blur. And our little boy is home and healthy.
On a lighter note, Mason got moved to a window seat. Josh has been requesting this since we have been there and finally there was an opening. So here is a picture of Mason's home for now:
Thanks to Lindsay Franks and Pierce's Project (www.piercesproject.com) for Mason's beautiful blanket/isolet cover as part of a care package. She reached out to me over facebook when she saw our story (Pierce is a 23 weeker as well and is doing great...another fighter) and has been a great resource for me to help ease our worries when things aren't going well because she has been there. Thanks to so many other people who have also sent encouraging words/messages through facebook. I have tried to respond to some but many I haven't had a chance to and just know that I am so thankful for them. They are helping us so much through this rough time. And thank you for your continued prayers.
Philippians 4:6-7do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
This little boy got a bath today and smelled fresh and clean. I am sure it was about time! She said he was pretty smelly. He also has a bad case of cradle cap that they are trying to get rid of. Check out his spiky hair!
Mason had a busy day today. He had his weekly cranial ultrasound and they ordered x-rays of his wrists. They are going to start giving him a diuretic to try to get any small amounts of fluid off of his lungs two times a day. Because he has already had lasix (a harsher diuretic) he is at risk for having ricket's disease. Ricket's disease is a softening of the bones and is usually caused from a vitamin D deficiency but in premies it can be brought on by diuretics pulling fluid off, as well as calcium and phosphorus away from the bones. They wanted to go ahead and check for this because they can supplement him and they would put a sign up saying he fragile (that way nurses and other professionals would be extra careful when working with him). They are hoping that this diuretic will give him the extra push to get off the vent. They also increased his feeds to 3 today and he continues to tolerate them well. He LOVES to sleep on his belly and was stating good. His blood gas tonight was better so hopefully the medicine is already working. They were able to go down a little bit on his rates. All in all it was another good day.
Psalm 118:1 Give thanks to the Lord, for He is good. His love endures forever.
Corbin had his day made today because we got to go to the swimming pool AND go to the farm to ride the tractors and see the neigh neighs. He went to bed tonight one happy boy. We also went up to the hospital this morning to see Mason and Corbin finally got to see him out of his "house". Pam was getting ready to change his diaper and work with him so she raised the top so we could give him some love and see him. In his picture below you can see how much he has grown.
Mason had several blood gases that weren't as good as they had been so they have gone up some on his rate and pressures. They also did some labs and his hemoglobin was low so they did a blood transfusion. His platelets were also dropped (down to 96) but they rechecked just those this evening and it showed 136 so they think it was just lab error. They let his feedings be today and didn't increase since he was getting blood but will look at that again tomorrow. Hopefully they will get this blood gas thing straightened out...prayers for this because he had been doing very good. They want everything just right before they try to extubate again because all was great before they did it last time and it still didn't go well.
I am constantly reminded by little things throughout the day how much we are being carried by prayers through this whole situation. The other day I remembered a poem that I always held near and dear to my heart when I was younger and it really hit home. God is carrying us through all of this. How often we need to be reminded that God is always there for us even when we can't see Him and he carries us through all difficult trials in our life.
Footprints in the Sand
One night I had a dream... I dreamed I was walking along the beach with the Lord, and Across the sky flashed scenes from my life. For each scene I noticed two sets of footprints in the sand; One belonged to me, and the other to the Lord. When the last scene of my life flashed before us, I looked back at the footprints in the sand. I noticed that many times along the path of my life, There was only one set of footprints. I also noticed that it happened at the very lowest and saddest times in my life This really bothered me, and I questioned the Lord about it. "Lord, you said that once I decided to follow you, You would walk with me all the way; But I have noticed that during the most troublesome times in my life, There is only one set of footprints. I don't understand why in times when I needed you the most, you should leave me. The Lord replied, "My precious, precious child. I love you, and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, It was then that I carried you."
Mason will be 6 weeks old at 10:36 p.m. tonight. I have been thinking back to that night today and looking at his pictures from that night. My how tiny he was. How hard that time was not knowing what was going to come. If he was going to make it. I still know that just the littlest set back could take him away from us today. Or tomorrow. But am thankful that God has a plan. Thankfully, Mason continues to have good days. He is tolerating his feedings and they increased them again to 2.6. The dr. said that he really feels like the feedings are really helping him. The NP said, "He finally has cheeks!" Mason had an eye exam today because he is at risk for growing too many blood vessels in his eye and possible hemorrhaging and so far it looked ok but they will recheck him every 2 weeks. If this ever becomes an issue he will have lasik surgery to correct this. This morning he weighed 2 lb. 3 oz so he continues to gain pretty steadily. The dr. also mentioned that he is doing well on his vent and that they are probably going to try to extubate him again later on this week. The respiratory therapist came and did another MVT test to see how he might tolerate extubation and he did great. Last time he passed with a 69% (needed a 50%) and this time he scored a 122%! She said that was great. So we will see...maybe with the appropriate machine this time and with a little more time to grow he will tolerate it. He is a tough little guy! We continue to be so thankful for all of your prayers for our little man. We are blessed!
It has been awhile since I have updated what our first sweet boy was up to. At some point I am going to put up pictures of his 2 year old "little red car" party. That took place the day before all of this started happening with Mason.
Helping Mommy pay bills.
Everyone says once you have a baby your first child all of a sudden grows up. Well, I would say that is true. That week that everything happened with Mason and that I was in the hospital it was like Corbin matured a lot. And has kept growing and growing. He is such a sweet boy but has also begun pushing our limits as well. He has started becoming clingy when I leave him (which has NEVER been like him) but I know he can sense that our lives are upside down right now. A major milestone: Corbin is now eating bread. Pretty consistantly. I know that sounds silly but it is the little things in life, right? His vocabulary and use of words are pretty unbelievable. The other night he asked Josh "cut up chicken please, Daddy". My mom came over this morning to bring him breakfast and asked where Mason was and he said "at the hospital". He LOVES to sing and music and knows a wide variety of songs (including the majority of the words). Some examples are, Jesus loves me, twinkle little star, the farmer and the dell, baby bumblebee, you are my sunshine, old macdonald, and this little light of mine. He also loves anything transportation and will often ask to "ride Gigi's tractor, feed the neigh neighs (horses) carrots and apples, go to the farm." He loves playing with our iphone and ipad and is starting to recognize letters from playing with the starfall app. He is a very brave boy and with just a few times in the swimming pool he is working on jumping into Josh's arms. We are blessed with this sweet boy. Before he goes to bed he likes to watch dressage or "choo choo" videos on you tube and he will say, "Moon out Mommy, night night time." Just recently he has begun using sentences such as "I did it Mommy" "This is my Juri." We are so proud of him and thankful to be his parents. I know he doesn't understand what all is going on right now but we try to explain it to him the best way we can. It is hard to know how to balance everything right now but we are doing the best we can and pray that God will be with each of our babies.
So I used to always think if we can just make it through the day and Mason be ok and not have any major setbacks. Praying we could make it, handle whatever was going to happen and that he would grow stronger. Now I am trying to change my mindset and think Mason is one day closer to coming home. It is hard to imagine that right now, I'm not going to lie. Hard to imagine the day when both of my boys will play together. Will actually fight together. Will come up and complain to me about each other and whine. I think I will embrace those days. Everyone has said to me that going through something like this really changes your perspective. I completely agree. No matter what happens I have to see this as a blessing. We were meant to travel this road. To go through this. One day I will understand why. But for today I thank the Lord for each and every day that we are traveling this journey. He will help us understand this one day.
This morning, Mason had another bad blood gas. Again, it was related to tube placement. They went ahead and changed his settings and did a chest x-ray to check for fluids. His lungs showed no "wetness" and the next one was a lot better. He is just really positional in relation to his tube placement. They increased his feedings to 2.2 cc per hour which is almost a "half way" point. This means that he is half way to taking in what they consider complete feedings. If everything continues to go well they think he will be at complete feedings in about 8-9 days. Labs were done and they all looked good. His sodium was a little low so they adjusted that. Other then that it was a good day. He continues to grow and seems to be getting stronger. He weighed 2 lb. 2 1/2 oz. We are so thankful for your continued prayers. Please pray for continued healing for Mason over his whole body. Pray for him to grow and for his brain bleed to have minimal/no effects. I believe in miracles and in the power of prayer. Through anything we go through in life we must remember that He has it in the palm of His hands and He is carrying us through. Let this be our prayer.
Mason had another good day yesterday. We can't complain! He has gained up to 2 lb. 1 oz. and the continue to be able to increase his feedings (I think he is up to 1.8 now). They also increased his fluids as well since now he isn't retaining fluids so that will help him as well. We are happy that he is off all of his medicines now and can hopefully just get stronger and grow. While we were there yesterday, another baby came in to have surgery and we got to see the inside of what happens there. It was deja vu...only 3 weeks ago we were going through the same scary feeling and now here we were on the other side of the "bridge". I remember all the uncertainties and being so scared and feeling helpless. But our God had a plan and he continues to be faithful. I am reminded of this everyday as we continue to plug along through each and every day.
Genesis 28:7 I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.
Mason continues to have a lot of personality even though he is so little. While they were prepping the other baby for surgery he decided he was going to pull on his breathing tube. I had to pull his hand off of it numerous times and I tried to tell him he needed to behave because they were going to be very busy for a little bit and didn't need any distractions. But he continued to pull on it pretty hard to be so little.
Sorry the quality isn't that good (Josh gave me a lesson afterwards) but you can see that he has his hand wrapped around it.
Big yawn...I am completely innocent and was NOT trying to get in trouble.
Here is our other sneaky boy...this is how he was dressed on the way to breakfast. He has to wear his sunglasses now (like Mommy and Daddy). He says "Sun is bright. Need sunglasses. " They are too funny but we continue to be thankful for our family each and every day.