1 Thessalonians 5:16-18 Rejoice always; pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
We continue to be blessed with good days and are so thankful. We got good news this morning that Mason's platelet count this morning was 116! The general consensus is that the reading of 53 yesterday was an error since his platelets had been trending upward anyway. He is holding his temperature well in his bed and tolerating his feeds so he was increased to 3 ml/hour. Overall, his swelling looks SO much better! PT has been working with him and the only stiff spot he has seems to be in his left shoulder so we worked on applying slight touch/pressure to try to encourage his arm forward and he did it. He also enjoys sucking on his passy and is still remembering to breathe so that is good. Sometimes that can be a problem. They are continuing to consult with hematology about the clots but so far nothing extensive has been done. Again, just thankful that they are in a spot that isn't blocking anything. It was nice just to hold Mason today and not worry and take a deep breath and relax. I think today I realized it had been a really LONG time since I had exhaled and truly breathed a sigh of relief. Yes, we have trusted in God (and continue to) throughout this whole time but that isn't saying that it hasn't been hard or stressful. We are just so thankful that everything seems to be improving. Mason, you are truly one strong little guy and have been through so much in your short life. We all love you so much! Corbin is ready for you to come home to ride in his tractor (and talks about it every day). I think it will be a while before this mommy is ready for Mason to ride in the tractor!
Today we will be thankful. We got some good news from the MRI. No evidence of anymore infection and the fluid has decreased and overall decrease in the size of his ventricles. They are still enlarged due to the brain bleed but overall improvement. They did, however, find a clot in a vein in Mason's brain. This is all suspicious considering that there was also a new clot found last week in Mason's heart (superior vena cava). They are going to refer back to hematology to see if they can get to the bottom of this. The typical treatment for a clot would be a blood thinner but because of Mason's history this is NOT an option. Other cause for concern is his platelets dropped to 53 today (I think from 86). So I am hoping and praying that they can figure this out.
So that means Mason is off of the antibiotics. He is off of his pain medicine. He is off of the vent and breathing with CPAP. He is off the heat bed and we will see how he tolerates an open bed. When he got extubated he kept sneezing over and over. It was so cute! He is also down around 5 oz. today so he continues to loose the extra fluid which is good. They increased his feeds to 2 ml per hour today as well. He had clothes on today and struggled to fit in his preemie clothes. And I got to hold him again! We are grateful for blessings big and small. He is definitely moving in the right direction and for that we are so thankful. God continues to hold him in the palm of His hand.
Sweet boy working on opening his eyes. That is hard work!
When they said day 101 of life today it is hard to believe that it is has been 101 days since all of this started. In some ways it seems like a blur but in some ways it seems like years have gone by. A lot changed in our lives 101 days ago. We are so thankful for each moment with our family of 4 no matter how hard it has been.
Today's journey to MRI went much smoother than the last one. No fires or evacuations. Mason tolerated everything ok and was good to go. Nothing much changed today other than they did switch him over to breastmilk on his feeds. They weaned his fentanyl down to 2 and he had his first "lab holiday" (they didn't order any labs on him) since his surgery. He continues to look so much better and is having urine output and is losing some of that fluid. I am hoping and praying that we get good news tomorrow. Right now that is all we can do.
Well, no MRI today. There was a schedule problem because they didn't realize that anesthesiology needed to be there so we will try again tomorrow. There must be something about us and MRI's. A lot of today's decisions were centered around the MRI because Mason is extubatable (yay!) and he could start back feeds of breastmilk but now they are going to wait until after the MRI for all of that. The MRI machine is pretty loud and they need for Mason to be very still so they have to give him some sedative to calm him down so they can get a clear picture. But we are just so thankful that he is doing better and we can even consider coming off the vent and feeds again!
Please pray for Mason's MRI tomorrow that there will be improvement and that he will be able to come off the antibiotics. We need to see ventricles and decreased overall fluid on his brain so that his brain will be able to grow. He is doing well and continues to lose weight and tolerate everything else. He is our sweet boy!
Today we have been blessed. Mason is doing very well. His vitals have been stable and his breathing is improving. He is completely off the nitric oxide and is doing well on the conventional vent. Last night he lost 6 oz. and he is looking so much better! They started back his feeds (just of pedialyte) and he had already pooped on his own this afternoon. I know it seems silly to be excited about a bowel movement! He has an MRI tomorrow afternoon to check to see if he can come off the antibiotics so please pray that we get good news. His CSF cultures have been coming back showing improvement so we are praying this is moving in the right direction. All in all a good day and we are blessed. So thankful for all your prayers and that Mason is improving. What a difference a week makes.
Your love never fails, it never gives up, it never runs out on me.
We continue to make small steps in the right direction. Mason is tolerating the conventional vent and they have been able to wean down on his pressures. By tomorrow morning at 6 a.m. he should be off of the nitric oxide that was helping him with his pulmonary hypertension. They are adding on another diuretic (diamox) to help with everything as well. Recently he has been getting the hiccups A LOT and it really makes him mad. The plan is to schedule a MRI early this week to check the status of his ventriculitis to see if it is safe to take him off of the meropinum and vancomycin. The surgeon on call this weekend ordered glycerin chips to help stimulate a bowel movement and it worked so we will see if they give the go ahead to start back feeds tomorrow. All in all Mason continues to make baby steps towards good progress and we are SO thankful he is moving in the right direction! He has allowed us to continue to see light even in the darkest moments for we learn the most when we are in the valley. John 8:12 Jesus said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life."
We have been so blessed by people who have offered to help give me days and who have offered to help us in other ways. One of Josh's good friends from high school, Jen Denis has set up a site to help raise money. We greatly appreciate her taking the time to do this. God is truly going to get us through this time of need. The link to the site she created is: www.indiegogo.com/babymason. Most importantly we continue to need your prayers of healing for our little boy. He has fought so hard through all of this with God being with him every step of the way and we have faith that he is going to make it through it and surprise them all!
Today Mason looked so much better! He was definitely less swollen and had finally lost some weight. It has taken awhile but he is finally moving in the right direction. He was more aware and able to open his eyes better (since they weren't so swollen). They moved him to the conventional vent and weaned his nitric by 1 down to 4 and he seemed to tolerate that ok. They are hearing bowel sounds so hopefully he will poop sometime soon so that he can begin to eat again. He is weighing in at 6 lbs. 9 oz (remember he is still really swollen and that is a lot of edema weight). We are so thankful that he is doing better. We sure do love our sweet boy and miss him so much. Wish we could all be together. We look forward to the day when we have everyone under the same roof!
I know he still looks swollen but this is so much better!
Tonight we celebrate and are thankful. The day started off not great though...Josh called to get the morning report and the night nurse said she had visibly seen Mason having seizures. He was smacking his lips, moving his eyes. I hurried to get ready and get up there to see. They still hadn't heard any information for neurology. I went ahead and went to rounds and all labs are looking ok. Infectious disease thinks the clot in the heart isn't infection...good news continues to be that the clot isn't blocking anything. Please pray that this will resolve. Cardiology will continue to follow. They are hoping to get him off the jet tomorrow and back on the conventional vent. Blood gases continue to be good. They were able to wean the nitric oxide down to 5. Continue to give the lasix to get rid of the fluid. We are still waiting on him to poop again so they are able to start back feeds. Still hadn't heard from neurology yet but if they hadn't heard anything by this afternoon then they would contact them. I went back to pump hoping we would get some answers. When I came back out I saw neurology taking away a computer. I was hoping and praying it was Mason's. When I turned the corner I saw no computer and they were taking the EEG equipment off of his head. They reported no seizures since August 21st. Thank the Lord! We continue to pray everything is moving in the right direction now. We are SO thankful for some positive news and a good day. To Him be the glory! Thanks for continued prayers and support!
Psalm 103:1 Bless the Lord, O my soul; and all that is within me Bless His holy name.
My devotional today (date August 23) excerpt from Sarah Young's Jesus Calling:
Entrust your loved ones to ME; release them into My protective care. They are much safer with Me than in your clinging hands. If you let a loved one become an idol in your heart, you endanger that one--as well as yourself. Remember the extreme measures I used with Abraham and Isaac. I took Isaac to the very point of death to free Abraham from son worship. Both Abraham and Isaac suffered terribly because of the father's undisciplined emotions. I detest idolatry, even in the form of parental love. When you release loved ones to Me, you are free to cling to My hand. As you entrust others into My care, I am free to shower blessings on them. My Presence will go with them wherever they go, and I will give them rest. This same Presence stays with you, as you relax and place your trust in Me. Watch to see what I will do.
Mason is making improvements today. Thank the Lord! Blood gases have continued to be good and they continue to wean and also took his nitric oxide down to 10. He was much more alert today than yesterday and was trying to open up his puffy eyes to see me when I spoke to him. All cultures have come back negative but they did find a thrombus/cast on the echocardiogram which they are suspecting to be slight place of infection in the heart (endocarditis). Good news is it isn't interrupting the flow of the blood but they think this might be why the drop in the platelets, etc. We didn't hear from neurology today in regards to his seizures and they sure made their presence known yesterday when he was continuing to have seizures so at this rate I feel like no news is GOOD news. Overall he looked less puffy and swollen and they are going to continue to give him lasix, now 3 times a day. Hopefully he might be off the jet tomorrow and they may think about starting back feeds soon. I am so thankful for all these milestones even though they seem small. For a couple of days we were grasping for anything positive. Tonight as Corbin was saying his prayers tonight he said, Dear God please be with Mason, and James and Mason and Mommy and Daddy. Amen. We love both our sweet boys so much. Lord, we watch and we wait for your guidance every step of the way.
Trust me, and don't be afraid. That was my message today. Today has been tough. This week has been tough. Mason is very sick. He is on so many medicines that I can't remember them all and have given up on trying to remember. He has continued to have seizures so they added more seizure medicine and increased his dose of the first one. His seizures are present only on the left side so they are monitoring it closely and wanting neurosurgery to pull CSF off the left side to help with the pressure. Today he had multiple assessments: echocardiogram, vascular test, cranial ultrasound, and continuing with the EEG. At one point there was a line waiting to get into his bed. They also wanted to re-iterate what his future will be. I understand it all...they think he will amount to nothing. Be a vegetable. Hard news to handle but I get it. I really try not to be negative but I know none of this is good. I truly believe that God wouldn't have brought or kept Mason in this world to be a vegetable. And if that is all Mason's life amounts to then we will still love him with all of our heart because God gave us the privilege of loving him and having him in our lives. Yes, it is a priveledge. Mason has touched so many lives including ours. We love him so much and pray so fervently for his healing. And believe in his healing. Josh and I truly have faith and believe that God can heal our little boy. He turns 3 months old tonight. 3 months ago our lives were changed forever. Trust Me, and don't be afraid; for I am your Strength, Song, and Salvation.
Mason continues to do about the same. This afternoon his blood pressure started dropping again so back on the dopamine. He will soon be off versed completely and is changed over to ativan to help with agitation. They said one of the side effects of versed is seizures. His blood gases have been really good and they were able to wean down some today so hopefully we are improving there. We have seen no more seizure activity today but neurology hasn't been up to evaluate so we aren't for sure he hasn't had any seizures again. He will turn 13 weeks old this evening.
In other news, I have decided to take a year off from work. For those of you who don't know, I am a speech therapist for Guilford County schools. As time drew closer for me to go back to work I was beginning to panic about how I was going to balance all of this: Mason in the hospital, Corbin, pumping, work, being a wife, cooking, laundry, etc. I imagined getting a phone call while I was at work saying Mason wasn't doing well and then trying to continue to work even though I was 30-45 minutes away. What kind of quality job would I be doing during times like these and would it be fair to the children that I work with? We rely on my income so this decision has been a tough one but we do feel like this is what is necessary and is what God wanted us to do. Both of our boys need my care, Mason especially right now. And when he comes home, I know he is going to need my undivided attention. Right now we are trusting that God will provide. I am still employed through Guilford County but have been able to take a years family medical leave. This assures that I will have a job in one year and will give us time to evaluate the kind of care that Mason is going to require. It is also necessary that I maintain my status to keep Mason's health care insurance to pay for unsurmountable medical bills. Our HR representative has set this up so others within the school systems are able to donate days if they are able, which is a blessing. A couple of weeks ago I went to pack up my classroom where I have been for almost 7 years. It was a bittersweet moment for me because I will miss those at Frazier but right now I have to take care of my family and myself. You never know or can imagine what is going to happen in life but I am blessed with great co-workers, family, friends, and people that we don't even know that have reached out to help us in this time of need.
This Monday I would have gone back to work. Doubt is a horrible thing but that morning as I was getting Corbin and myself ready to go to the hospital I was doubting our decision for me to stay home. How are we going to make it? Was this the right thing to do right now? What are we going to do? That is the morning I got that fateful phone call saying that Mason had taken a turn for the worse. I remember thinking to myself, this morning if I had returned to work, I would have received this call at work. I would have had to deal with this emotion AND be at work. I knew then that we would make it and that ultimately it was the right decision for us right now. Thank you all so much for you continuing to follow our story, sharing our story, and praying for our family. I know it is what gets us through times like these.
Last night we got a call that Mason was suspected of having seizures. They started him on phenobarbital to help with that and a 24 hour EEG. EEG has since confirmed that they were seizures. He will continue to be monitored and on a maintenance dose. He is now on coverage for antibiotics for fungal and viral infection. No infection has grown out yet. His platelets continue to drop. He is on numerous drugs to help with sedation so he won't fight the ventilator but his breathing is improving. That is a good thing. He will continue to receive lasix and albumin to help pull off fluid. I am thankful we are seeing some improvement in his breathing. We have got to be thankful for any good news.
So Mason has pulmonary hypertension which basically means he is having a hard time breathing and getting oxygen throughout his body which is, in turn, putting stress on his heart. The echo showed it actually wasn't as bad as they thought it was going to be but this is still not a good thing. They started him on nitric oxide to help open up his alveoli in his lungs but it really hadn't seemed to help this much when we had left. The biggest problem is Mason is fighting the jet vent and they put him on a versed drip to try to calm him down and tonight they had to increase it to 60 but atleast he was sedate. He doesn't understand that this has to be done to help him so he has to rest and relax and let the jet do its job. Infectious disease got involved again and they did another complete work up to look for infection (blood cultures) and they put him back on anthro-b (an anti-fungal). I am almost hoping they find something because atleast that will be an answer. Thank you so much for all your thoughts and prayers. We are continuing to rely on Him to get us through this and trust that He will bring Mason through. My devotion this morning (that I read at 5 a.m. before all of this started happening) was titled "I am the God who heals". Coincidence I think not. Please continue to join us in praying for complete healing for our sweet boy.
Matthew 7:7-8 Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
Not good news. Over the night Mason had a really hard time breathing and this morning they suctioned blood out of his lungs. Pulmonary hemorrhaging is what they are thinking and chest X-ray either shows blood or infection in the lungs. He had to go on the jet ventilator and have a platelet transfusion. White blood cells are up slightly. Still waiting for Crp score. They are going to do an echo of his heart to look for pulmonary hypertension and if that is present then they will put him on some medicine that will help with that. His body is still incredibly swollen and his dr today said we have got to figure out the underlying cause of all of this and that he is certainly much sicker then she would anticipate one week after surgery. They are getting infectious disease back in the picture. Please pray. I am so ready for Mason to be better and be healed. I hope everything will get figured out soon.
Overall, Mason is about the same. He hasn't really lost a lot of fluid according to his weight and how his body looks. The good news is it might have rearranged a little and isn't pulling his incision open. So that is a blessing. He is having problems with his platelets dropping and they have given him some albumin to try to pull everything in and follow it with lasix to try to get some of the fluid out. The surgeon on call this weekend wants to continue giving him albumin followed by lasix until we see an improvement. Hopefully that will be sometime soon! They are weaning his fentanyl now and giving him versed if he seems agitated. He is breathing better over the vent and this afternoon I massaged his legs (to try to get some of the swelling out) and he really liked it. He was trying to turn his head to see who was doing it and it was cute to see his little eyes cut back at me. So basically we have to get that swelling off! I am so glad it isn't hurting his belly so bad and he does seem like he is feeling better so that is good. This little boy needs to loose some weight and get off the vent!
Today Mason's platelets had dropped even more (even after transfusion) so he got transfused again. His potassium was also very low (I think 2.1) so they adjusted his hyperal and gave him some as well. Hopefully this will help. His incision looks a little better even though the left side is still opening up and has some fluid coming out of it. Overall, he was still in a lot of pain so they went up on his fentanyl to 5. We are so blessed to have nurses that are perceptive and really care and are good advocates for our sweet boy. I probably haven't said that enough but we are very thankful for them taking care of Mason, treating him as their own son, when we can't be there 24 hours a day. We appreciate you guys! So by the time Josh had got their this afternoon, Mason was resting comfortably. They had weaned down his vent settings but they went back up on his rate and re-positioned his tube because his last gas wasn't that great. Since they had increased his pain medicine, that in turn will affect his ability to breath so they wanted to increase his rate to help balance out everything. He would have periods today where you could tell it was bothering him to take breaths (and use his stomach in general) and he would just stop breathing and then he would de-stat and his heart rate would drop. All in all a bad combination. So basically we need for the swelling to continue to go down and his stomach to heal up. He still has decreased bowel sounds which means his stomach isn't working very well, so until it kicks into gear again they won't restart feeds. We will get there. All in time but we still just have to take one day at a time.
The hardest part about today was seeing Mason in pain. He had woken up some more and was not happy and was hurting. They did end up increasing his fentanyl dosing to help out with this. Mason is REALLY swollen. I can't stress this enough. His belly is so tight it looks like plastic. Unfortunately, his belly has an incision from his surgery a few days ago which means all of this pressure is pushing that incision back open. This is not good and is causing pain. The plan is to give him lasix regularly to help draw that fluid off but typically the chest and stomach area is the last place the fluid will pull off. So we will wait and pray that it will improve before his incision opens back up. His platelets had also dropped some and he is getting bloody discharge out of his replogle which is probably due to some irritation. They transfused platelets and put him on zantac to help soothe his stomach. He is still on the vent because he is so swollen he is having problems breathing (it is like he has bricks on his chest due to the swelling) so until we get this fluid off he will need the vent to help him breathe.
We got some mixed reviews about the cranial ultrasound. We thought there was an overall decrease (which I spoke of last night) but turns out there is a decrease in fluid on the left side and decrease of the overall left "shift" of fluid but the right side has a slight increase. Dr. Powers came and talked to Josh this afternoon and said that this was normal and they aren't concerned about it. The brain is doing what it should be doing for now and it is balancing back out. So that still was positive news and we are thankful. I am so ready for Mason to get better and recover from this. I do not like seeing him in pain and the nurses do a great job of catching it and speaking to the dr.'s to make sure this does not happen. Today was a down day for me because no mother likes to see your child uncomfortable and in pain and I am so ready for him to be better but the only thing I can do is pray for healing and trust in God. Mason is so strong and has endured so much. I am so ready for his suffering to decrease and for us to cross over this hurdle. He is such a tough child and is probably going to give us a run for our money!
Through this experience I have definitely learned to think on situations a lot differently. You can NEVER know what other people are going through. We are so easily caught up in our own day to day life that we often don't see or take the time to see what is going on in front of us. I think often we are so quick to judge about how people may act or react but until you have been in someone else's shoes you just don't know what they may be going through. People may look fine on the outside but they might be hurting on the inside. I have encountered people that are going through hard situations and may or may not have family support. I can not imagine going through this alone but I see people everyday that are. It just really makes me stop and think about how blessed we are because we are surrounded by family and friends that are so supportive. We are so thankful for all the people that have reached out to us for prayer, offer for help, and words of encouragement.
Mason is improving today. His hemoglobin was around 7 this morning so they did another transfusion and 2 more albumin transfusions. He also got lasix today and had an all time record high diaper of 218 cc. Normally he is around 8-12 cc. His blood pressure is more stable but they did leave him on dopamine just to help draw off some of the fluid because he is still REALLY swollen. He also had a cranial ultrasound and we got good news that the size of his ventricles have decreased which means that there is less fluid. An answer to prayer. Neuro came and drew off 10 cc this afternoon out of the reservoir (that is their daily plan) and the fluid looked a lot more normal (didn't mention but yesterday it was dark colored probably due to surgery). Also, he had an eye exam today and the dr. said his eyes looked great and he will recheck them in 2 weeks. Feeds can start back up once he poops but there has been so much other stuff going on that we haven't been concerned with that yet. All in good time. He is more alert and his color looks so much better. His last blood gas this evening looked great and he is starting to breath more over the vent which is a good thing. So we are getting there. Just got to keep getting all this fluid off of him so he can look more like himself and be healthier. Thank you God for keeping Mason safe in your hands.
Just remember as you are walking day to day that those you pass by may be going through so much and you never know what their story might be. Sometimes even a smile may be enough to encourage them throughout their day. I love this song by Matthew West and it really puts this all into perspective. Sometimes we get so caught up in our day to day life that we really lose sight of the big picture. Take the time to love all those around you and hold your family and friends close. Live every day thankfully because we have so much to be thankful for and don't take life for granted. Help out your neighbors, even in the simplest fashion. For this is what God calls us to do.
So I am going to give you a quick summary of a long day. This morning when they did a CBC to check Mason's hemoglobin it was 4.4. That is critically low. So even though the surgeon had held off to give blood now it HAD to happen. Mason's blood pressure was very unstable and they had to put him on dopamine to help with that. He had decreased/no urine output. He is incredibly swollen...probably the worst that I have seen him. His head is almost shaped like a cone because gravity is pulling all of the edema downwards. Tonight his hemoglobin had improved to 8.6 which is still low but they are going to hold off on transfusing again since he is so swollen. Now his platelets have dropped as well to 39 so he will get some of them, as well as albumin. Urine output has improved which is good news. So we just have to move over this other bump in the road and keep pushing forward. He is pretty sick right now but I know we will get through it because we have God on our side and because Mason is one tough little guy!
Mason's surgery went well today. They did his reconnect surgery first and it went smoothly. He reconnected his intestines in one spot and then noticed another spot that looked constricted so he went ahead and repaired that as well, and took out his appendix. We didn't really know he was going to do that but he said that is pretty standard. Next, was his brain surgery to place a reservoir and that went well and took around 15 minutes. They said he did great during the surgery. He is back on the vent which we expected and it took him a really long time to start waking up today. Mason didn't end up getting a blood transfusion so he is pretty pale and had a little bit of difficulty with his blood pressure this afternoon. It was running low and his heart rate was high. They gave him a bolus of fluids and tonight his blood pressure had come back up and his heart rate is still running a little high (which could be from pain or being too hot). He is beginning to wake up more and more which is a good thing but he will probably need pain medicine to keep him calm. He is also hungry and was sucking and sucking. Poor baby. Tonight will probably be a fine balance of keeping him comfortable and calm. I am sure he isn't feeling too good.Thank you so much for your prayers and please continue to pray for him specifically that he would heal quickly, get off the vent, and keep on growing!
The red stuff on his head is just a cleaning/sterilizing solution they used prior to surgery (betadine).
We went down with Mason at 5:50 from the NICU and met with all the dr.s and nurses. They were taking him into surgery at just before 7. Prayers are appreciated Here is a picture of his holding pod right before surgery.
The big day is tomorrow bright and early at 7 a.m. Mason will be taken down pretty early they say. Josh and I are going to try to get there early so that we can see/spend some time with him before he gets taken to surgery. Please say prayers for guidance of the surgeons hands and for everything to go smoothly. They say everything they are doing is routine but it still makes me nervous. I will update on here as soon as we know something tomorrow. Thanks for your prayers.
Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
This morning Corbin said, "I want to go see Mason" so off we went. He sure does love his little brother and really doesn't understand why he can't go home with us. Corbin was so excited when we got there because Mommy got to hold Mason! He couldn't believe he was coming out of his bed. He got to sit next to us and see Mason up close.
Corbin was telling Mason about John Deere Tractors and is excited to show him one some day.
He also got to touch Mason's hands too. You can see how small Mason still is because the "big" hand belongs to Corbin here.
Mason was doing well. His head continues to get more full each day but it hasn't got tight or tense yet so they are pretty sure he can hold off until Monday. His bag keeps coming off and they have to change it a lot. He will probably get blood and platelets tomorrow before surgery just to prepare him for it. While we were holding him he showed us some smiles. We sure do have 2 sweet boys and feel very blessed and thankful for them in our lives.
We finally have an official time for Mason's surgery...it will be 7:00 a.m. Monday morning. Now we can kind of plan our day accordingly. The surgeon said for the re-connect surgery it should take up to 2-3 hours and then neurosurgery said it should be around 1 hour so that will take up a large part of the morning. We are praying for everything to go smooth and as planned. Mason continues to do well the only thing is he had to go back into an isolette because he got a little cold last night. He is located right where the A/c vent is in the room which also doesn't help because (to me) it is always freezing cold in there but anyway that is what he needs for now. They did order a chest x-ray today just to check his lungs because he has been de-stating more than normal but all of that checked out ok so I think we are good to go.
Today we are thankful. Thankful for milestones that have been met and another good day. Mason went down for his contrast study and I got to go with him. That was very interesting and I wish I had taken my camera but to make a long story short Mason was put on a long rod that looked like a ski and velcro was wrapped around him and they inserted contrast die up his bottom and rotated him around like he was on a skewer. He did NOT appreciate it but we got the good news that his stomach and intestines are all working like they should. For this procedure, all of Mason's feeds and fluids had been turned off for a short bit and when we got back to the NICU I got to hold him. While I was holding him, he started to smack and suck like he was hungry! That was the first time I have ever heard him smack his lips and he just looked up at me and kept doing it over and over! Once his feeds got turned back on though he was a happy camper but I was so thankful to see him do this and thankful for a good report for his stomach!
Mason also got a "big boy bed" today since he is trying to be like his big brother Corbin (Corbin's big boy bed is going well but he has fallen out a couple of times). Mason's bed still has a heater on the top in case he gets cold and it is staying on minimal settings right now. We are very excited that he is tolerating this! This morning he weighed 4 lb. 10 oz. He keeps growing and growing. They also removed his right EVD from his head last night. Mason was back to his feisty self today which made this Mommy feel better. He was pretty tired after a busy morning with a field trip and slept the rest of afternoon. Below is the sleepy boy in his "big boy bed".
Psalm 118:1 Give thanks to the Lord, for He is good; His love endures forever.
Mason's surgery is finally scheduled for Monday! We aren't sure an exact time yet but atleast we are moving closer. Mason also had a cranial ultrasound today and it showed that the left side had filled back up after the tap that was done on Monday. Josh was able to talk to Dr. Couture tonight and he said that he would like to put in a reservoir in the left side and pull the EVD out of the right side. We are pretty sure the right EVD is clogged but that side of the head seems to be good for now. So I think unless Mason becomes symptomatic then the EVD will be put in place on Monday during the re-connective surgery. They decreased Mason's nasal cannula some again and he did have more de-stating today than normal but they think he sounds pretty congested. Josh got to hold him today and once he was positioned upright he started stating 100. They left his feeds as is because he had increased ostomy output and that was the only change for today. He is going to have a contrast study tomorrow morning to make sure that his intestines, etc. are still functioning well. We are praying for good results from that as well. I guess next week will be a busy week for our sweet boy. Below you can see a good picture of Mason's EVD.
So to make a long story short we still don't know when Mason's surgery is...as you know his surgeon is on maternity leave and the dr. who was supposed to take her place is going on vacation tomorrow which means 4 caseloads of surgery is now having to be fit into 2. So we aren't really sure where this leaves us but I know it is all in God's hands. So we will keep waiting. Meanwhile, Mason is doing well. He is handling the nasal canula and they increased his feeds again to 5.1. This morning he weighed around 4 lbs. 5 oz. They are slightly concerned about some edema that has hung around in his groin and leg area but haven't suggested any medicine as far as that goes. We are so thankful to have some "restful days" where we can just coast along and grow (and the fact that Mason is 11 weeks old tonight). And we also continue to be SO thankful for your prayers. It means more than you can imagine and we feel an overwhelming since of peace. We truly believe as Pastor Don said on Sunday that God has a purpose. He never wastes pain. And we know that God has a big plan for Mason's life. We just have to our eyes on Him and trust in His provision.
2 Thessalonians 3:16 Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.
So far no surgery is scheduled. The dr. that initially operated on Mason had her baby today and the dr. that is scheduled to take her place is out until tomorrow. Neuro came this morning and pulled 20 ml off of Mason's head on the left side. Josh talked with Dr. Couture tonight and he is optimistic that maybe that will be all they have to do. So we will pray for that. Mason is now off of CPAP and is just on nasal canula and is doing well with that and they increased his feeds to 4.8 per hour. He had a great day which is a blessing! He learned a new trick today...how to suck his thumb!
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.- Romans 5: 3-5
This little boy is resting up to what is probably going to be a busy week. We should know a lot more tomorrow as far as when surgery might be scheduled. We are hoping for this week but learned sometimes it might be pushed into the week after. So we will see. He spent today just relaxing and resting. He is on the lowest pressures on Cpap and they increased his feeds to 4.5 (I think) and he seems to be tolerating that. Had to change his bag at midnight and again sometime this morning so they are still having problems with that. So we should know a lot more after tomorrow...
We are also hoping to get some rest tonight. Tonight is Corbin's first night in his big boy bed and we are hoping it is successful! He was SO excited! Don't know if it was the best night to start considering I think he is getting in his 2 year old molars. Oh well, sleep is overrated anyway right?
Ok, well after speaking with the dr.s today we have a plan for Mason and this upcoming week is probably going to be a busy one. I don't think I have mentioned much about it but Mason's ostomy bag has been giving them a really hard time and the skin around the stoma is beginning to break down and he also has some break down under his bag as well which could possibly lead to more infection if it is not taken care of. They are having a hard time keeping the bag on (and every time they have to change it it is like pulling a band aid off of a wound) and due to all of this they feel it is time to go ahead and re-connect his intestines from the perforation. He has reached the goal weight for this which was around 4 lbs. and he is doing well so this seems to take a precedent right now. We also talked to neurosurgery and an intervention is needed to help the left side of Mason's brain drain...so, after much consideration they are going to tap and pull the fluid off on Monday to relieve the pressure and if the fluid fills back up then when Mason goes down to the OR for his intestinal surgery next week then they will go ahead and put in an EVD on the left side of the brain. They also aren't sure if his right EVD is working appropriately so when they will also be evaluating this as well. That kind of gives us/them some time to evaluate his brain and see what it is going to do or need in the future. And it will go ahead and be a permanent fix for his stomach and he can go ahead and recover from that and move ahead. So they will be consulting with his surgeon on Monday to go ahead and put him on the schedule for surgery. Please begin to pray that all of this goes well and for the wisdom/guidance for the dr's, surgeons, and for us. This sure is a lot for our little man to have to go through but he sure has been a trooper thus far. We continue to thank ALL of you for your prayers and for your words of encouragement and for sharing Mason's story with others. We believe in the power of prayer and the more people that know our little boys story, the more chance that prayers of healing are being lifted up. It is hard to believe that our little baby is almost 11 weeks old!
This afternoon we did get the results of the cranial ultrasound and it was as expected. Mason's EVD is only draining on the right side of the brain. There is either some infection or protein (probably due to the brain bleed) that is blocking the fluid from floating across the brain and draining out the EVD. Mason's dr. said that if it isn't better by tomorrow morning that she will contact neurosurgery to come and see what the next step is. Of course, this is not what we were hoping to hear. But to everything there is a purpose and a plan. So we will continue on this path to intervention and recovery and pray for the best outcome. God is the great healer and I am calling on him to heal Mason.
Mason continues to grow...he finally hit the 4 lb. mark and is weighing in at 4 lbs. 1 oz. He continues to do well with his feeds and with his breathing. We love our little boy so much and it is great to see him look like a "big boy" all dressed up in his clothes. We continue to look to God for healing and pray for His will in this situation. We were chosen to be Mason's parents and to advocate for him and we will be there for him. I still have faith that God is going to restore him no matter what the odds are or what is told to us. I will tell you that they say the outcome won't be good statistically speaking. But I don't like to dwell on that on here or be negative. And as I have said before our God is not bound by statistics. Because God has proven to be faithful and we have continued to feel his presence so strongly through all of this. And He will continue to be.
Matthew 21: 21-22 Jesus replied, "Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, " Go throw yourself into the sea," and it will be done. If you believe, you will receive whatever you ask for in prayer."
Some days I feel like I am stuck in the movie Groundhog Day. In this movie, actor Bill Murray finds himself stuck, re-living the same day over and over again. In our world, everyday seems the same but different in some ways. I keep waiting to wake up to a different reality but this is our new "normal". I had things planned so differently but I guess that is what happens sometimes. But we will take what we have been given and be thankful for it. We have 2 perfect little baby boys and are blessed that God has entrusted us to take care of them. And for that we will be thankful. Not to say that we don't get weary. Tonight, Josh said to me that he needs to start working out and get in better shape. He said this marathon is about to kill me (referencing the dr. that said Mason's journey isn's a sprint it is a marathon).
So really nothing new today. Last night, neurosurgery came in and adjusted the pressure on Mason's EVD and within an hour or so 9 more ml came out. But since then not much has released and the dr.'s are still saying his head feels full. Neurosurgery did come back tonight and mess around with it some more and no more came out and the nurse said he seemed pleased with everything. Really, it all comes down to the cranial ultrasound tomorrow. That should show them if there is still a large amount of hydrocephalus (extra CSF) on his brain. So please pray for good results tomorrow. Mason is now weighing around 3 lbs. 15 oz. now and he is 15" long. They increased his feeds to 3.9 an hour today and decreased his pressure level some on Cpap to 5 and he has handled all of this pretty well. We thank God for everything because it is truly his work in each milestone that is met. Mason is really starting to look like a baby dressed in his cute little clothes. Below is his latest picture.
So here is the latest. Mason's head still feels full so they think that both sides aren't draining off of each other. Basically the evd they put in last night is only draining the right side and not both sides because there is a blockage in the middle. They are still hopeful for shunt surgery in 2 weeks but if both sides can't drain simultaneously then they aren't really sure how that is going to work. White blood cell count high in CSF at 11,000 Please share and pray that both sides will drain together so this will be a more simple fix and that this infection will clear up. Dr. here hasn't seen a case like this do isn't really sure what neurosurgery would do but I hope and pray that they can come up with a plan. May God heal my little boy.