Growing boy

Mason's day yesterday started off with a bad blood gas which after a chest x ray showed that his breathing tube was positioned too far right. They were pretty confidant that was the cause of the bad gas but they were also concerned about the trend of his hero score. This is something that is used to predict infections and they like for it to be below 1. Mason's was 7 and had been gradually rising since Wed. All of his lab work didn't suggest infection though. His white blood count was down and platelets were up. The only thing that was down was his hemoglobin so they went ahead and did a blood transfusion. They did another gas after changing tube placement and it was better and they were going to watch him throughout the day to see if the tube placement change and giving him blood made his hero score start to trend back downward. They did increase his feedings and he has gained to 2 lbs. They weren't going to change anything else until they saw if his score started heading back down. If not then they would start doing an infection work up and start him back on antibiotics.

Josh went up there in the afternoon and his score had already jumped down from 7 to a 5. In a few more hours it was down to a 4 and this morning it is a 3. They aren't concerned now and think it was definitely due to the tube placement. No more changes so far today other then increasing his feedings again and his fluids. Thank you Lord for you continued healing of our little boy!

Another test?

Mason got a new "room" today (bed) so he is all fresh and clean. He continued his trend on good days. He rested comfortably (even though he did get pretty hot due to the manual settings on his bed) and he got up to 100.9 so we had to open up the doors and the top to cool him off. His heart rate was up a little bit (to around 180). They are going to turn his settings down a little more because this has seemed to be a little bit of an issue this week where he has gotten hot for different reasons, which brings up his heart rate. I think he is just hot natured like the rest of the men in my life (Josh and Corbin) so I am going to be in trouble!

 Everything looked good. Cranial ultrasound unchanged and labs will be done tomorrow. Increased his feedings to 1.2 mL per hour and that is about it. He will start working with PT and OT because of his brain bleed and they were going to come and work with him today. They are going to do another minute ventilation test either tonight or tomorrow to see if he could be extubated again. I am not sure how I feel about this because I don't understand what could really have changed in 3 days to make them think he will tolerate it better. We will see tomorrow what the plan is but I do wait they would wait a little longer. I  know it is better for him to not be ventilated but if he isn't ready this moment then it is ok. He may be ready next week or the week after but I wish they would atleast wait a full week before they tried again. Anyway, just my feelings. Below is a picture of him holding my finger while we were trying to "air him out". You can see all of his features and his head full of hair. We sure do love you sweet Mason.

Plugging along

Mason all tucked in with Mommy.

Mason had an uneventful day pretty much. He continues to tolerate his feeds so they increased it to .9 mL per hour which comes out to almost 22 cc per day. I think my mom calculated that to be around 4 teaspoons a day just to give you an idea of how much that is. His blood gas this morning was good so they weaned him a little bit on his ventilator. I got to hold him again and he did get a little "hot and bothered" about it afterwards. Apparently he got pretty warm while I was holding him and then he got upset once he got back in his bed. They just gave him some medicine to calm him down. He also got his weekly cranial ultrasound and they will go over the results of that tomorrow. Off his hydrocortisone so they are watching his blood pressure pretty closely to make sure that it won't drop. I have had several people ask me how much he weighs and as of today he is 1 lb. 15 oz. He just needs to continue having good days, continue to grow, and have all of his body heal.

If you look on the left, this is a picture that Corbin painted at VBS. When they asked him about it he said, "Mason". So he either made it as a gift for Mason or he drew it to look like Mason. Either way, I am proud of him for being a good big brother. He is definitely feeling a shift within the past couple of weeks and has become a lot more insecure. He had a hard time going to bed tonight and kept calling for Mommy and when I went up there would ask about Daddy. Thank you for your continued prayers through all of this. 

5 weeks old

Mason had a better day and did a lot of sleeping to catch up from everything yesterday. There were very little changes today. They continued to wean the hydrocortisone and increased his feeds to .6 (I think). His platelet count was high (144) which means he finally made some of his own! Yay! All his other blood work continued to look great. They are watching his stoma because there is an extra hole on the side of it and if it gets too close to his skin then it might not be a good thing. Best case scenario: watch it; worst case scenario: surgery. So far the surgeon isn't concerned so we will see. Tonight at 10:36 he will be 5 weeks old. Every day is a milestone.

Taking it easy while my Daddy holds me.

A Valley

It was definitely one of those days. I got frustrated. We all got frustrated I think. It hasn't been an easy road. Every day I feel so torn. You see I was supposed to be spending this summer doing fun things with Corbin before Mason came. We can do some but anytime I am with Corbin I am wondering and wanting to be with Mason. Anytime I am with Mason I am wishing and wondering about Corbin. Josh and I are exhausted and stressed. Josh still has to deal with work and I am getting up every 2 and  a half hours to pump at night to keep my milk supply up. We are making it through all of this through God and your prayers and notes of encouragement. Thank you.

But nevertheless it still was a hard day. They extubated Mason and intubated him again all in the same day. Yesterday he was taken off his fentanyl (pain medicine) and they decreased his hydrocortisone again to continue to wean him off of it. He just didn't look happy. Right before they came to extubate his heart rate increased really high to 200+ and he was really hot. His temperature sensor wasn't reading correctly so they had to wait until he got cooler and then they took his breathing tube out. I had to leave but apparently that didn't go well. He got really upset and wouldn't calm down. They had to give him some medicine to calm him down. And some more. He was not happy. They had his oxygen up to 100% and he still was only taking in 80% or less on the monitor. They did a chest x-ray to see what was going on and they saw fluid on his lungs. They haven't done an x-ray in awhile because he has been doing so well so we don't really know how long that has been there. They gave him some lasix to draw off the fluid and pulled 30 cc of air off his stomach. His heart rate continued to stay high and his respiration was up. By the time Josh and I got there last night it wasn't good. I held him for a bit to try to get him to calm down and they were able to wean his oxygen down to 70% but by then the NP came in and said she wasn't comfortable with this. The tube went back in. Now everyone had told us it was likely that this would happen. And that the whole world of the NICU is a roller coaster...5 steps forward and 3 steps backward. But living it is a whole different thing. Feeling sick to your stomach and watching your little child suffer is a whole different thing.

Josh called this morning and he handled the intubation well. After the initial period he calmed d back down and his heart rate came back down and he is back down to 42% on his oxygen instead of 100%. He still had periods wear he got really hot during the night and his nurse said that she thinks it is just him working himself up and that it could also be due to his brain bleed.  They didn't end up putting him on the CIPAPP. I am not sure what they did put him on but it was supposed to be smarter technology. The little nasal tubes were having a hard time even staying in his nose since it is so tiny and they had a difficult time with any of them getting a good seal. I guess Mason just needs to grow a little bit and get a little stronger before this happens again. The NP said it also might be an airway issue that he might be swollen and puffy and not be able to get air appropriately towards his lungs. They also started feeds yesterday so hopefully he will tolerate those. Through all of this I must remember that God is here with us, carrying us through it all.

Psalm 23:1-4

The Lord is my shepherd; I shall not want.

He maketh me to lie down in green pastures; he leadeth me beside the still waters.

He restoreth my soul; he leadeth me in the paths of righteousness for his name's sake.

Yea, though I walk through the valley of the shadow of death, I will fear no evil:

for though art with me; thy rod and thy staff they comfort me.

Test: Day 2

Mom and Dad these tests wear me out!

Today Mason had another breathing test with the correct equipment and passed with a 69% which was a more accurate reading than the test given yesterday. But...they don't have the appropriate equipment available to give him. They are wanting to put him on a SIPAP which also has rates on it and during the test he did have periods of apnea still so they would prefer to put him on this rather than the regular CPAP. The only problem is they only have 4 of them and they are all being used. So they are going to try to get another one for him tomorrow. So hopefully that will all work out. As for everything else he seems to be doing well. They have gone down on pressures and rates on his current vent and blood gases continue to remain good. They have weaned his fentanyl down to 1 and plan to get rid of it tomorrow and they also reduced his hydrocortisone as well. They are discussing feedings but the surgeon that did his surgery wasn't there this weekend so they are going to wait on discussing that until tomorrow. My mom went to rounds and the NP said that Mason was doing great and was her "rockstar". He keeps on surprising everyone and we know it is due to God's healing hand and your prayers. We are blessed to be the parents of our two boys! Speaking of...

Corbin enjoys coming to visit Mason so that he can play with the  "choo choo" trains and the roof top playground. 

Here is a picture of him being silly before bedtime. He loves to wear hats sometimes! We sure love both of our boys and are thankful that God has entrusted them to us. 

He passed the test...almost

Today when we called the nurse for an update she mentioned that they might be converting Mason to the CPAP machine or side PAP. We were very excited because this means that he would extubated (the tube that is helping him breath would be removed and he would basically be responsible for breathing with a little assistance). When we got there for rounds they mentioned he had continued to have good blood gases and that he would be given a one minute test to see how well he could handle breathing by himself. He had to get atleast a 50% for them to be able to consider extubating. Basically all of his other labs were looking good and the only change was decreasing his hydrocortisone by 20%. They aren't going to consider feeding him right now since they were considering changing to the CPAP and they only want to make one big change at a time. The respiratory therapist came to do the test and it actually was a 10 minute test (even though the name is 1 minute test) that looked at his rates and ability to sustain himself for over a 10 minute period. He did pretty good (from our stand point) but near the end he did drop down on his stats to 78% which shows he was getting a little tired. She said that his percentage was 220% but that she didn't feel comfortable switching him over yet because the kind of machine he was on didn't measure over time so she would like to switch him over to a different machine that measured atleast a 24 hour period and then they could also use that information to make their decision. I would much rather them take their time with this since this is a pretty big step. We have been told that a lot of babies are extubated and then they have to go back in intubation because they get too tired from breathing on their own. We are in this for the long haul so I am fine to wait and just keep praying that his whole body continues to develop and get stronger so it can function more on its own without all of this extra help (even though I am glad that it is there for him).

I got to do skin to skin with him for a bit today (also called "kangaroo care"). We both really enjoyed it and he got snuggled up and went to sleep on me. You really take a lot of things for granted until you have something like this happen. It just feels good to hold your baby, even though it may be around tubes, beeps, and tons of machines. I could sit there for hours. 

We continue to pray for you Mason. Every night during prayers, Corbin says "Mason sleeping". He sure loves his little brother. I look forward to the days when they can play together even though they seem very far off right now. 

1 month old

Well, we made it to 1 month! What a blessing and a milestone. Little Mason had another good day and had some good blood gases so they continue to be able to go down on his pressures. The are going to pull his PICC line and pretty much no other changes. They did decrease his hydrocortisone shot because his blood pressure was beginning to run a little high and they wanted to lower it a little bit. They will have to wean him off of it over time anyway. They said he was being a wild man today so he did have to have a couple of doses of versed to calm him down. I think that is just normal for him unless he is on a lot of sedation because he moved ALL THE TIME when I was pregnant. We are very blessed by this special little guy and continue to be thankful for each and every day we spend together. Thank you guys so much for all of your prayers. I know we would not be where we are today if it wasn't for all of the prayers that have been prayed over our little boy and know that we are and will be forever grateful because of this.

Mark 11:24 Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. 


John 14:13-14 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask anything in my name, I will do it.

Blessings

Count your blessings is the old saying. Well, today we will do just that. Mason has had a great day. The swelling has gone down, the medicine worked. Praise the Lord! He is now off his dopamine, versed, and vancomycin. When I got there this morning they were taking him off the jet and putting him onto the conventional vent because his blood gases had been "phenomenal". All of his platelet counts, electrolyte counts, etc. looked great and for the first time they said his chest x-ray showed that his lungs looked clear (not patchy, fluid filled, hazy, swollen). Cranial ultra-sound showed no change and they were going to talk with his surgeon to discuss pulling his central line and beginning feedings. He looked like a "new man" (as his nurse, Pam said). You could actually see his features on his face. They were going to keep him on the hydrocortisone today because they were making so many other changes. We also got to hold him again today which means Josh got to hold him for the first time. We were so excited to be able to do that again and Josh actually got permission to leave work early so that he wouldn't miss this opportunity. Mason was a feisty little thing while we were holding him (holding true to the same way he behaved in my stomach, kicking me all the time) and he would kick and kick today while we were holding him. It was funny because he looked so peaceful on the outside but he was moving his legs all the time trying to work them out. Below are some pictures:

 His sweet little face.

Daddy is so excited to get to hold his little boy.

Such a good feeling to get to hold your baby.

Through all of this today I realized that no matter what we are going through big or small we never know what blessings we might face today. This song by Laura Story, has always held a special place in my heart but it really rang home today through what we are going through. Every time I got in the car and turned on the radio it was playing and again, I felt like God was speaking to me. Through any trial in our life, God can change it into a blessing. God has it in the palm of his hand and has a plan for each and everything that we are going through. I truly believe this and even though I do not know what tomorrow holds, He does. And that gives me peace through all of this. Even though I am scared and  know there will be more "roller coaster NICU rides". But I know that He will be with us through it all.

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love is way too much to give us lesser things.

"Cause what if your blessings come through raindrops

What if your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life, are Your mercies in disguise.

Every day is a miracle

I find myself thanking God every day while I am saying prayers with Corbin or praying just throughout the day, "Thank you God for another day where our family is together." Even though we aren't "together" we are still a family. Maybe not under one roof. Yet. But God has a plan for all of that. Every day is a miracle and a day that we get to spend with both of our boys. I continue to thank all of you for your prayers because they do mean so much to us. Our little boy needs continued prayers for healing and for the guidance of the Drs. that are treating him
 Mason is really swollen and puffy today. I think his weight was 1090 grams (I think-I know it was 10 something). This is not "real" weight because the majority of it is fluid. They were worried about his stomach again so they ran a test and that came back normal. They were also worried about infection again but know the are covering their basis on that with the antiobiotics. Fungal infection results came back negative so he has no fungal infection. They also were worried about possible blood clot around the heart and the don't think it is that because swelling/edema would be more localized to that specific spot and they also did an echo-cardiogram on him last week that would have shown that. So Mason has what the Dr. described as "leaky vessels". We even had the nurse prac. come and try to explain it tonight and I am still not sure I understand but from the best of my understanding it is where fluids just escape from the veins (due to our bodies reaction) and go into the extra-vascular sections like the lungs, stomach, tissues, etc. So they are giving him steroids to try to tighten up the veins and a lot of Lasix to get rid of the fluid. His platelets continue to be low (as well as hemoglobin) which could also point to this (as well as the infection). He had some bad blood gases last night and they had to go up on the pressures but that is probably due to all the swelling and they have gotten better since they have started the medicine and have been able to decrease some of his pressures. He also got a cranial ultrasound today and we will find out the results tomorrow but the NP prepared us that most of these micro-premies like Mason do have to have the surgery for hydrocephalus where they go in and place a shunt so I am trying to prepare myself for that possibility. She said, unfortunately the odds are stacked agains him, but I don't believe in odds. I believe in God and he can do wonderful and miraculous things. Join with me in continuing to pray for miracles for our sweet Mason.

Walking the tight rope

Mason continued to have a semi-non-eventful day. The gave him some lasix to get ride of some of the swelling and extra fluid and decreased his versed (sedative). Well, the lasix made his blood pressure drop so the gave him a bolus of fluid and ended up having to start back the dopamine (blood pressure medicine) this evening.This is a fine line because they need him to get rid of the extra fluid so they give him medicine for that which gets rid of fluid but in the whole process also gets rid of fluid in the wrong places as well (ex. blood pressure). So then they have to give him more fluids to help his blood pressure. Kind of stuck in a cycle. As for everything else he has been coasting along and having good blood gases and they keep suctioning out a lot of fluid/mucous out of his lungs. Get it out of there! He relaxed mostly today and did open his eyes and hold Mommy's hand for a little bit. Keep on a growing Mason.  We all sure love you buddy! Hard to believe you are 4 weeks old tonight. Corbin thinks every little baby is Mason.

Just plugging along

Today Mason has had a good day (so far). Hopefully it will continue this way during the evening and night. They completely discontinued his blood pressure medicine and his blood pressure has stayed good throughout the day. He was a little more swollen (even though according to his weigh in last night he had lost weight). They are hoping that he will continue to get some of the fluid off but if his blood pressure stays stable they will probably give him some medicine to help him get if off. He was due for a weekly cranial ultrasound but was unable to have it because of the IV in his head. Hopefully he will get that IV out tomorrow if the fungal infection comes back negative because he can get off of that medicine if he doesn't continue to need it. His urine output continued to be good so that is encouraging. They also mentioned in the near future giving him a shot of steroids to help his lungs which would get him off the ventilator but she wants to get him through the infection first. The surgeon said that if things continue to go well that she would possibly think about him having a little bit of food at the end of the week. He still had some difficult with de-stating and had to have his oxygen turned up a little more than  they would like but overall it was a pretty good day.

Stay strong little man. Lots of people are continuing to pray for you and the Lord is with you every step of the way.

Isaiah 41:10 "Fear not, for I am with you; be not dismayed, for I am  your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand."

Happy Father's Day

Because all little boys want to be like their Daddy. We all love you Josh and are so thankful for you in our lives whether it is husband or Daddy. Here is a video of Corbin trying to fix his hair like his Daddy does:

http://www.youtube.com/watch?v=kRYWyobS4BM

Mason has had a pretty good day today in honor of Father's Day. The nurse said she pulled out a lot of fluid/mucous from his tube so hopefully all of that is getting cleared out of his lungs. They worked on weaning him more of his dopamine (blood pressure medicine) and he has withstood that ok. He had a bad blood gas before we left but they rechecked it a couple hours later and it was better. They are thinking it was just a fluke. I sure am thankful for our little boys and their Daddy and for all of your prayers.

We'll take the good

So today has been an uneventful day for Mason (so far that is). We never know what the night will bring but as for now we will take it. They weaned his dopamine (blood pressure medicine) down pretty far but they had to go back up a little bit because his blood pressure started coming down a little bit. He got some blood and they changed out his vent bandages, etc. The nurse said that she was changing his bag and that she knows they aren't supposed to have good fine motor skills but he reached down and grabbed his stoma. She said well he just had good luck so she cleaned his hand off and went on about her business and he reached down and grabbed it again. She said that now he was in trouble for misbehaving and she had to clean him up again and he got a "bath". Blood gases have been good today and I think that is about it. We will take it! Thank you Lord for a good day.

Nahum 1:7 "The Lord is good, a refuge in times of trouble. He cares for those who trust in Him."

Friday

Well, I was beginning to think that Friday was going to be my new dreaded day of the week. Who could ever dread a Friday though, right? This morning at rounds, they were concerned with how some of the blood pressures had read through the night so they decided to go ahead and do an echo-cardiogram to see if the PDA valve had re-opened due to stress. If it had this would mean more surgery.     They also wanted to check him out to see if he had a fungal infection as well so they needed a urine sample, blood sample from both the PICC and the central line and they ordered an abdominal ultrasound as well. Once 11:00 hit Mason had something going on with him until about 3 in the afternoon and he WAS NOT HAPPY.  Sitting and watching your child suffer is no fun and it got to the point during the abdominal ultrasound that I had about had enough. He was pushing so hard on his stomach that only 1 week ago today had been cut open and messed around with during surgery. Oh well, I think he handled all the cards that he was dealt today pretty tolerably considering. They were able to go down on some of the pressures on the vent due to good blood gases. The cardiologist had to come back in and re-do the echocardiogram because he wasn't pleased with the picture but there was no PDA valve present which is good news. No surgery. For a Friday. Not saying that we won't have to face this on another day. But let's hope and pray not. Hopefully our little boy will get some rest tonight and they won't have to do too much poking and prodding. We sure do love you little boy.

Impossible

Impossible. That is a word I have wrestled with a lot here lately. Impossible that my little baby is here too early. Impossible that this is our new life. Our new routine. We have also heard it from drs. When we asked when Mason could move back to Women's. It is impossible. That was our answer. We are not happy with it but it was our answer nevertheless. Today God spoke to both Josh and I using that word. I would say more than speak, He shouted at us to remind us of His faithfulness. I received a devotion forwarded to me (from Proverbs 31 ministry) from a dear friend and Josh received the same one forwarded to him from his boss. Here is the message God had for us:

This is the news. He is the truth. What the drs give us on a daily basis is just the news but God is the truth and He only knows the truth. We have access to truth that transcends the news. What is impossible for man's limitations is always possible with our limitless God. She goes on to say that she likes to think of the word impossible in a new way. We now think of it as I'm possible because our God is the great I AM.

This is news.

And This is the Truth:

I AM THE WAY AND THE TRUTH AND THE LIFE.
"I am the way and the truth and the life. No one comes to the Father except through me." John 14:6

I AM FOREVER FAITHFUL.
"He is the Maker of heaven and earth, the sea, and everything in them-He remains faithful forever." Psalm 146:6

I AM WITH YOU.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

I AM HOLDING YOU.
"Yet I am always with you; you hold me by my right hand." Psalm 73:23

I AM YOUR HIDING PLACE.
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance." Psalm 32:7

Oh how thankful I am that God is with us on every step of this journey and how he continuously reminds us that He is here. I don't know how I would be making it through this without Him.

Today has been a rough day. I think they finally have the position right on his vent. They finally put in a wheel (like he had at women's) to help with this. I sure wish the 2 medical facilities would converse with one another but they certainly seem reluctant to do that here. Mason's blood pressure has been dropping today and he has has some bad blood gases. Whenever they would change the pressure his gases would improve but his blood pressure would drop. We were stuck in this cycle today with giving him a bolus of fluids and waiting and no good and now we are back on some BP medicine and have seen improvements. Thank you for your continued prayers. This is a journey I trying to give thanks through, even though it is hard.

My Brother is like a baby bird

 One of the nurses up at the NICU gave Josh this book ("My Brother Is Like A Baby Bird") for Corbin. It really was a sweet book and does a good job of describing all the things that go on in the NICU and helping children understand. It is hard to know exactly what percentage Corbin is taking in of all of this but he does know he has a baby brother named Mason and he often asks, "Mason home?" Hopefully someday soon buddy, someday soon... 

 Today was a pretty low key day. They did a chest x-ray and changed around his breathing tube to try to help him from de-stating. Before that he had had a bad blood gas which the think was a fluke due to the placement of the chest tube. They also changed the equipment that was measuring his breaths and things looked better. He was still up a lot on oxygen and they eventually were able to 67%. He still did de-stat but his breaths on the monitor looked a lot more rhythmic than yesterday and he got down to 79 where yesterday he got a lot lower than that. We just talked to the nurse and he is continuing to de-stat and they are going to do another chest x-ray to check for tube placement.  Overall, he was pretty calm and relaxed. Rounds went well. I asked if they were concerned or when would they get concerned about this and she said that it is probably due to the pneumonia and him recovering from this. They were talking about lowering his fentanyl but his nurse, Pam said why don't we just leave it alone today. Thank goodness...I just wanted to have a low key day. Blood gases got better and they did change his rates a little bit but that is about it. Praying for a peaceful night and healing for his little body and for God to fight off this infection. In His hands all things are possible. 

Playing catch up: 3 weeks old

Today wasn't the greatest day for Mason. Dr. Zeller even said, well he did better than expected after surgery so maybe we are playing catch up. Everything was mainly ok but he kept de-stating all day long where he would jump from 91 to 70 or sometimes even 60. They had to keep his oxygen up to 100% sometimes even which is very unusual for him. The respiratory therapist did get some thick mucous out of his lungs which is probably the pneumonia and said sometimes the chest x rays can play tricks on us and look better when actually all of the mucous is coming up to the top of the lungs and he can't get it out on his own. They had to put him back on the jet ventilator last night because his blood gases had too much Co2 but they have looked pretty good all day long. His nurse did mention that sometimes the PDA on his heart can reopen after surgery or stress but that his range on his blood pressures (diastolic and systolic) would be wide as an indicator and his isn't. They did have to put him back on his agitation (versed) medicine since he is back on the jet because he was fighting it and trying to take breaths over it which that machine isn't meant for it to do. It is good that he is trying to do so but not good since that is the best thing for him to be on right now. They did increase his nutritional intake (TPN) and he is continuing to pass poop in his bag which is good. We will see, hoping they can get this figured out and straight. Everyone keeps saying that this is how premies are and you take 10 steps forward and 5 steps backward. I still have faith that God can heal his little body. Tonight he will be 3 weeks old. His Daddy finally got to kiss him today! We love you little boy. Keep on fighting "Mighty Mason"  (your nickname by many).

Lots of changes

Today has been a busy day for Mason with a lot of changes. He is being weaned of his fentanyl (drug for pain) and is off his versed (drug for agitation). He had another cranial ultra-sound today and the neurosurgeon came in and talked with us tonight and said everything looks pretty good (as in he probably want have to have surgery unless there are some major changes). His surgeon for his tummy came in and looked and said that everything was looking good and that for feedings they need the stuff coming out of his stomach to be clear and for him to continue passing poop. Well, he has had some more poop today go into his bag (enough to where his nurse had to clean it out) and he even had more when we went up this evening. The fluid from his stomach is still more of a light greenish/yellow color but still we are making progress! His lungs do sound pretty bad and he does have pneumonia but they are continuing to treat him on the antibiotics for that.

I was trying to open up my eyes again!

Mason also came off the jet ventilator and went onto the conventional vent. His rate had been at 420 today and when we left it was at around 35. They had weaned him down to 25 but his last blood gas had shown too much CO2 (which means they were weaning him down too quickly) so they did increase it. They also gave him some blood to try to boost up his oxygen level and that also worked as well. So overall, a very busy day for little man but he keeps on trucking along. Praying for a good restful night for him and us!

Almost 48 hours

Well, we are almost 48 hours post op and the Dr. came to check Mason this afternoon and he had poop. I was shocked when they told us. She went ahead and put on an ileostomy bag on him since this was happening. This is very good news. He weighed 1 lb 14 oz this morning from all the fluid and swelling. He is pretty puffy but swelling has decreased throughout the day. Urine output is still good and he is off the blood pressure medicine and insulin. He is one tough cookie, that is for sure. His pain and sedation is better today so that he isn't fighting the jet ventilator. He is hanging in there. We sure love this little boy!

The day after

Mason's surgery got finished up around midnight last night. We had to decide which surgery to do...the surgeon left it up to us and after praying we decided to elect for the surgery instead if a procedure where she would allow a hole for draining off the infection. With this it might would have been that he had to have the other surgery in a few days. After some waiting we found out it was good news...they only had to remove under an inch of the small intestine which had 3 perforations. Everything was meconium stained in his belly and they were able to clean that up. There were some other questionable areas but she was pretty certain that they were ok but just meconium stained because they felt ok. He did have some difficulty last night at one point because the vent tube had gotten moved and caused the top of his right lung to collapse. Everything else today has been pretty good. His blood pressure has been a little low so they have him on some medicine for that. They have made some changes with the vent and his blood gases are improving. His tummy looks a lot better to me. Hopefully we are improving. I think that is all for now. Thank you for your continued prayers... We continue to feel God's overwhelming presence and His peace during these difficult times.

Surgery

Mason is at Brenners now to receive surgery on his bowel. Please pray that this procedure goes well and that he does well. They have told us generally they get sicker before they get better. They are going to start here shortly and it could last from 30 minutes to an hour. Please pray for us and our little boy. This is very hard!

I finally got to hold him

I am gonna say that I was pretty nervous because I didn't want to hurt him but he did great. I held him like this for 1 hour and 15 minutes.

We made it through a Thursday

The past 2 Thursdays of Mason's life have been kind of crazy (seizure like activity, etc.) so we were hoping for a more laid back day today. I guess it was...platelets, blood sugars, etc. are still out of wack and they are and having been giving him more platelets and insulin to help combat that. His stomach looked less puffy today and wasn't discolored and it felt better (according to the Dr.). Lab results that came back tonight showed that his coagulation (clotting mechanism) is low so they are giving him AT3 to help combat that. All vitals, blood gases,. are looking pretty good right now and he has been resting. They were able to get rid of the fentanyl today again so that is also a plus. All the pain medicine they have him on can cause constipation and for everything to slow down so that also isn't really helping his stomach issues. Hopefully everything will work itself out without having to have surgery.  

 

May God watch over you tonight sweet boy and continue to heal your body.

Roller coaster

So it wasn't too long into this whole journey that someone (I wish I could remember who) said oh, well it will begin to seem like a roller coaster ride. Some days are good and some days are bad and some days it may not seem like days it may seem like some hours are good and some hours are bad. Well, I definitely understand.
 Mason has seemed better today but they are still concerned about the puffiness of his belly. That, along with the fact his platelets are low (which could point to coagulation (SP)-dealing with clotting) and his high blood sugar (today they had to start him on an insulin drip) and the fact that there isn't gas moving through the gut leads to bad signs. Bad signs that could mean surgery or the possibility of surgery. They are going to watch his potassium level (which if high could mean that there is some dying off of cells in the stomach. They have found out his specific strand was ecoli so they have been able to treat it specifically. So again, I am asking for prayers. swellings or swelling to go down, for gas in the belly and I would REALLY like for him to poop and be able to take in some milk and keep it down and let it pass through his little body. I know that our God can do anything.

This is how we found our little angel tonight.

 On a slightly different note I have to tell a story about Corbin. Last night, Josh had shown Corbin the picture of Mason holding onto my finger. Well, this morning we were sitting together eating breakfast and out of nowhere Corbin said, "Mason night night" and I said yes, he probably is night night. And he said, "Mommy and Mason" and put his arm on my arm and pointed to my phone and said, "Show me Mommy and Mason." He was so excited when I finally "got" that he wanted to see that picture and it just made me so aware that even though I am not sure how much Corbin understands, he does. What an awesome God we serve, I hope and pray each day that He will heal us all of this roller coaster ride and carry us through because we surely can not do this without His provision.

Sweet sweet baby

Today we kind of found out what was going on with Mason. Blood cultures came back positive for infection. They had already started him on 3 anti-biotics last night because that is what they suspected. Around 12 a.m. last night he had become very agitated and wasn't happy and basically nothing they gave him was calming him down or working. His oxygen was up to 100% and he was only breathing in at 65-70% this morning. Thankfully, things got better throughout the day I think as the anti-biotics started to work. His vitals came up, blood pressure started reading again, blood gases got better and tonight they are on 35% and he is taking in 95% for his oxygen. They are concerned about some puffiness in his belly and his bowels and are keeping an eye on that for now but he is still NPO for now until they get this infection under control. So right now the infection is in his blood and they were going to check his lungs to see if the same infection was in there as well. No matter what they find, his treatment that they already have him on, will stay the same wherever the infection shows up. We are thankful that the PICC line is in and they put in a central line last night so that way they don't have to continuously prick his heels. His urine output was great today and by tonight he was calmer (after more doses of anti-biotics). Again, thank you for your continued prayers. We greatly appreciate them. Here is a picture of me trying to calm him down. When I put my hands on his head, he reached out to grab my thumb. The nurse said it helped his stats and he did calm down. Such a sweet boy.

2 weeks old tonight

Tonight at 10:36 p.m., Mason will be 2 weeks old. Hard to believe. I guess I should go ahead and talk about what happened before I forget because at this rate I could forget pretty quickly. On Monday, 5/21 in afternoon car duty I began having some cramps but didn't really think much of it. I remember calling Josh on the way to my dentist appointment that afternoon and telling him I was tired and hoped that he could be home from work at a decent time so that he could help me with Corbin. After that I felt pretty much ok and went and got Corbin and headed to the grocery store. About the time I got home and was unloading the groceries I went to the bathroom and realized that I was bleeding. Pretty badly. I was actually on the phone with Josh (who was on his way home) and I hurried off to call my dr. I remember the dr. saying well, it is probably. Well, come on in anyway just to ease your mind and they will check you out. So as soon as my mom got there to take care of Corbin we headed on to the hospital. When we got there it was pretty busy in the waiting room and I was trying not to think the worst. They called me back and did the usual work up but when the lady checked me she immediately put me back on my head and her eyes got big. My bag of waters was right there and she wasn't expecting that. She went to call my dr. and let her know what was happening and they got to work setting up IVs for magnesium. After a what seemed like a whirlwind, I was being admitted, taken up to a room to wait things out hoping that the magnesium would work and I would be on bedrest or even better gravity would take over and everything would kind of go back to where it was supposed to be and they would stitch up/close my cervix.

The next day was filled with many meetings with the neonatologist to discuss what our plans would be for our baby when it would come. The odds weren't good...this year so far at Women's NICU they haven't had a 23 weeker survive and of those that did survive in country 80% of them have global delays. An outside ultrasound tech. came to see how big the baby was and discuss options. Off and on during all of this, I was having contractions and they moved me to a labor/delivery room. For a couple of hour I was contraction free which was exciting and Josh was planning to stay home with Corbin but I really felt like he needed to be up there that night. We had talked several times during the day trying to decide what we were going to do and couldn't make a decision. I knew I wanted dr.'s in the assess the baby but that is as far as we could get. Later on that night my contractions came back like gang busters and were 2 minutes apart and I was feeling like I needed to push. No dr. was there and my nurses weren't being very helpful but it wasn't too long and my water had broke. All of a sudden a midwife appeared and the NICU team. Fran, the midwife started searching for the baby's heartbeat and couldn't find it so she said it was time to push. With 1 push, Mason was out and I remember they kept saying for Dad/Josh to hurry up and cut the cord. I remember hearing Mason making noises which I felt like was a good sign and Josh came over and said the dr. said he was fighting to breath on his own and his skin looked good and they were going to help him. I was so thankful that we didn't have to make that decision. The dr. would later come into our room at around 2:30 a.m. and talk with us and say that he was a fighter and that he did nothing heroic by doing what he did and that any other dr. would have done the same thing. Again, so thankful that God had a plan during that time because there is no way as a parent we could have made that decision.

I had posted his picture on facebook and news that he had been born. By 2:30 a.m. I already had a message from a mother who had reached out the me because she had a child born in the same situation (another 23 weeker). The outpouring of love and support from people who have found out Mason's story and reached out to us have been wonderful and we have felt totally supported and prayed for by God. We are truly only making it through this because God is carrying us every step of the way and because of those who keep reaching out to us through their prayers and support. Thank you all for your continued prayers for this sweet boy.

Almost 13 days

Well, today has been a rough day. Mason had some bad blood gases beginning last night and they have made some changes in the bent. They tried to do the arterial line but that was unsuccessful so he had to have an IV in his head to receive some blood through today. Overall he just seemed dehydrated so he got some fluid and blood to try to help with that and improve his blood pressure. They mentioned another procedure that would allow them to get blood and give blood (a central line) but needed to see if that dr was in the country and available. Blood gases had looked better but then he had another bad one which caused some more changes. With all the things going on today they are going to start him on some antibiotics just in case he does have an infection. Dr was in the country ( had just flown in last night) do central line is in and they will now draw blood and be able to give blood through this. They think he has an infection since there has been such drastic changes today so back on antibiotics. It has been a busy day and we pray for continued healing. It is discouraging to have days like this but we have to remember Jeremiah 29:11 "For I know the plans I have for you, declares the Lord. Plans to prosper you and not harm you, plans to give you hope and a future."

Happy anniversary

This is what Mason made for us for our anniversary yesterday. We love it!

11 days old

Our first family picture...Corbin had his mouth full of ice.

Thank you Lord for good days and positive reports. We spoke with the neurologist and he said that the more good days that Mason has the better chance for recovery from his brain bleed. Where his bleeding is would affect his left leg but he says statistically speaking that 50% of these children recover with minimal effects. So pray for no infection, to come off the vent soon, for his gastro-intestional system to start working, and for him to start tolerating feedings better so that he can grow. They are going to give him medicine to try to get him to pass some more poop so hopefully he will tolerate feedings better. Thank you all for your continued prayers. It means so much! He is doing well and is opening his eyes a lot. 

Silly big brother

Spaghetti face and all. We sure love this sweet boy! Josh said yesterday he wanted to see baby brother and went and got his hands sanitized and held them in prayer position the whole time. He walked back and said "Maston" and then went back to his bed and said, "Maston out". He then said "Baby brother" and "I love you baby brother." This little boy has grown up so much in the past week or so. He still is such a sweet boy even though his world has been turned upside down. Atleast I am feeling better and I think I will be able to be with him more since I am feeling better. 

Almost 10 days old

Well, today we found out after an EEG that there wasn't seizure activity! Praise God! Mason started acting a little aggravated after all the procedures and I got to help "calm him down" by holding his feet in with one hand and then placing my other hand on his head. We are consulting with a neurologist to just give some more information. Feeding were started up again this morning (the had been dc'd last night due to seizure like activity and they were getting a lot of green slime material out of his stomach). His brain scan also showed that the bleeding was about the same but there looked to be slightly more fluid in the left hemisphere probably due to some of the bleeding resolving itself. The Dr. said during rounds that Mason doesn't present with a child that has these severe bleeds. That normally children with those kinds of bleeds  show visibility on his skull through the soft spot and act poorly but Mason isn't showing any of those signs. I know that God has all of this and Mason in His hands and I am so thankful for all of your prayers.   God is carrying us every step of the way.

I'm back under my spotlight today!

We saw this rainbow while we were at dinner. It was Corbin and Mason's brother rainbow (atleast that is what Corbin said).