CDH Awareness Day!

Today is CDH Awareness Day!!! I would love for you all to say a special prayer today for all the families who are fighting or have fought this terrible illness! These kids are very special!!!

48 Hours Down!

I am beyond happy to report that God has answered our prayers once again! We have had another successful 24 hours! Pearson is now 48 hours post surgery and winning this battle! What a strong little guy we have on our hands! The amount of support Pearson is receiving from the ECMO machine was able to be lowered again today. He is now at 160 and once he gets somewhere between 100-150 he can come off the ECMO! The lowest he ever got before surgery was 220 and his lungs couldn't compensate for anything lower, so he has already gotten farther than he ever has! We are hoping to possibly have him off in the next couple of days...it just all depends on Pearson! The nurse also said that both lungs are sounding better and working more everyday! The brain scan also came back today and showed that the bleed has not progressed and remains the same, which was great news! We are so thankful that God has given us another great day!!! I know this makes you all happy as well!!!

First 24 Hours Down

Let me start out by saying that it is 10:40 and Matt and I are laying in bed! This is a record time for the earliest we have gotten home from the hospital, so you know things must be going good! I am VERY happy to report that the first 24 hours after surgery have been better than we could have ever expected!!! Just to express to you how well things are going so far...when Dr. Kays came in this evening to check on Pearson, he walked over to read the stats on his machines and his response was "holy shit." He couldn't believe how good his numbers looked! He said that Pearson is responding really well to his surgery and because his numbers looked so good and it appears that his lungs are doing some of the work, they were able to start weaning him off the ECMO again.  We can't tell you how PROUD we are of our sweet little Pearson and we know that he is such a FIGHTER!!! He has already shown us that, and we can't wait to see what the future holds!!! Let's pray that the next 24 hours continues to get better, because we know that this day would not have been possible without God and all of your prayers. We can't tell you how blessed we feel to be surrounded with all of the love, support, and prayers you continue to send our way.  It is overwhelming to think about all of the people who are following Pearson's story and praying for us, and most importantly, Pearson! We will never be able to express how much this all has meant and will continue to mean to us.

2 Weeks Old!!!

Our precious miracle is 2 weeks old today!!!!! He had a good night and continues to rest today.  His stats are looking good so far.  They are closely watching his blood pressure, because if it falls too low or too high it can mean internal bleeding or cause the brain bleeding to get worse.  It was a little high earlier, but they have started him on some medication to try and regulate it.  The brain scan came back today and showed that the bleed has NOT gotten any worse.  This is great news, because Dr. Kays said yesterday that as long as the bleed doesn't progress then he isn't terribly concerned about it. We just pray that it stops!  Some of you have asked about his incision.  It is right below his right rib cage and is kind of diagonal and measures about 5". The doctors did a great job sewing him up and his incision has already started healing nicely.  We figure he will like showing it off one day! He will definitely have a great story to go with it! Our first 24 hours is almost up and we are pleased so far, but we also know how quickly things can change.  We are praying for another successful 24 hours with no complications!

SURGERY UPDATE!!!! Part 2

Pearson is out of surgery! Everything went GOOD as far as getting things moved back where they belong! We are by no means out of the woods, but we are one step closer to bringing our son home. He had 75-80% of his liver in his chest, which was the most Dr. Kays has ever seen, and most of his intestines. He had 10% of his diaphragm.  He is one of the worst cases he has dealt with, but we are still keeping the faith that Pearson is coming home! He expects Pearson will be on ECMO for another 10-12 days.  This was very surprising news to us as we were hoping it would be sooner. On average babies stay on ECMO for 10-14 days, and Pearson has already been on it for 12 days. The next couple of days are the most critical, and the next 6 days will be pretty rough as well.  With this good news comes some bad news.  When doing the brain scan today they found a bleed on Pearson's brain.  Dr. Kays was shocked to find this and said that Pearson wasn't showing any sign of neurological damage that he could see, but said that usually if they are going to bleed it is usually in the first few days, so having this happen this late in the process really stumped him.  They are adjusting some of his medicine, to help control the bleeding and as long as it doesn't progress then Dr. Kays said he isn't terribly concerned.  He will have another brain scan in the morning, so we will update you when we know something.  Thank you so much for all your thoughts, love, and prayers.  We hope you will continue to pray for this long road ahead of us.  You all are so special to us. Much Love from Matt and I!!!

Surgery Update

Today was a pretty good day! Pearson was able to rest most of the day. I'm sure these last couple of restless days finally wore his sweet little body out. Unfortunately, Pearson has come to a stand still and isn't making anymore progress. His lungs do not appear to be developing anymore so Dr. Kays plans to do surgery tomorrow. We were hoping he would be off the ECMO before the surgery but they are unable to wean him off anymore. However, just like last time, if he sees any progress between now and surgery tomorrow at 3:30 then he could very well postpone it again. We trust Dr. Kays and we know that God is working his miracle through him so whatever he feels is the right thing to do shall be done. We thank you so much for the continued prayers. We will update you tomorrow night.

Day 12 Update

Just wanted to give you all a quick update on our sweet 11 day old baby boy!!! My how time flies!  Pearson didn't have the best day.  He continued to be fussy and cried alot of the day.  They aren't sure if he's in pain, but assume he's just really uncomfortable.  They finally were able to go up on his sedation drip and also gave him additional sedation medication on top of that since nothing else was calming him down.  His oxygen levels didn't go down, they actually went up a little so that was really good.  We just need them to continue to go up so that he can get back to where he was before they made the machine change. Dr. Kays seems to be ok with everything still and he is continuing to wean him off the ECMO.  He was resting pretty good when we left the hospital, so we are praying for a restful and peaceful night for him.  It's so hard watching your baby go through this, but it's even harder when they show signs of discomfort and there's nothing you can do for them.  We are so blessed to have such wonderful nurses taking care of him!!!!! Tonight is the first night Matt and I have actually been home by midnight so we are going to take advantage and get some rest. (remember the time on the blog isn't correct...it's actually a little after midnight right now) Let's all pray for a better day tomorrow!!! Love you all and appreciate all of your comments, text, emails, and phone calls!!! Good Night!

Here are a couple of pics, and you will notice that Pearson doesn't have the blue wrap around his forehead.  They took it off for a little while and I got to snap a picture.  I've never seen him without it until tonight.  I saw his ear for the first time and the front of his head.  It makes me so excited for when I get to see what his whole head and face look like once they start removing tubes.  It's like his nurse said the other day, "he's so cute with all these tubes, I can't even imagine how cute he will be without them." Like I said, we have the best nurses!!!!  I also got a picture so you could see his hair. He doesn't have much to see, but there is more towards the back of his head that isn't visible in the pic.  He's got a little fohawk going on when it's laying the right way! You will also notice that his face is more swollen in these pics.  That is because they had to give him extra fluids last night, which caused this. 

What A Night!!!

As you know, Pearson started making progress on Wednesday so they didn't do the surgery.  Since then he has continued to make progress and has had some of his best days yet.  His oxygen has continued to get better, which means his lungs are starting to mature a little, and they have been able to slowly wean him off the ECMO machine.  There goal is to get him off of it before doing the surgery. It will pose alot less risk if they can wait on surgery.  It is possible that he could be off of ECMO in the next week.  Let's keep praying and I know God will answer our prayers!
I wanted to share all the positive news first, because things went a little differently last night. With the ECMO machine the circuits sometimes go bad after running them for a long period of time, and unfortunately this happened with Pearson's machine.  They had to change his machine out, which meant that they would have to take him off of the ECMO for about a minute while they switched him over.  Dr. Kays came in around 9 last night to make the switch and everything went good. Pearson responded really well during the change, which told Dr. Kays that his lungs are doing some work.  About an hour after the change of machines Pearson started taking a turn for the worse.  His numbers were down and he came out of being sedated.  When they switch machines they have to start all of his sedation medicine over so he woke up quite a bit when the medicine got out of his system and he became very aware of all the tubes in him.  HE WAS NOT HAPPY!!!! We dealt with a fussy baby for about 4 hours, which meant having to sit there and watch this sweet helpless little boy kick, throw arms, and cry for hours.  For those of you who don't know, these babies can cry, but can't make any noise so it absolutely breaks your heart when they are silently crying and there's not much you can do for them.  Finally, the sedation medicine kicked back in and he calmed back down around 2:00 this morning.  Matt and I certainly got a dose of parenthood and staying up late with an unhappy baby, except it's alot harder when you can't hold them or comfort them.  His oxygen levels haven't gotten back up to where they were prior to the machine change, but Dr. Kays seems to be ok with them at this point.  Hopefully after some rest today his numbers will go back up, but Dr. Kays did warn us that sometimes whent they have to switch our the machines it can set the baby back 12-24 hours. 

Everytime I get on the blog I see new followers and I'm so happy to see that so many people have found us!  It's a tough road we are on, but you all make it better! Thank you! 

GREAT NEWS!!!!!!

Once again our little guy has proven to be a FIGHTER!!!!!! We just spoke with Dr. Kays and he has decided to hold off on surgery.  In the last 24 hours Pearson has made more progress than he has the whole time.  Dr. Kays takes an x-ray everyday of his chest, and today's x-ray showed that his lungs have made some improvement, which he has not seen since he was born.  His oxygen levels were also the highest they have been, which is something else they look at everyday.  He will reevaluate Pearson everyday to decide when the time is right for surgery.  We are praying that he will continue to make progress, so that Dr. Kays will not have to do surgery until he is off ECMO.  God has once again answered our prayers and we know this would not be possible without all the prayers you all have sent up for him.  We thank you from the bottom of our heart.  We are so thankful for this wonderful day God has given us.

Happy 1 Week!!!

Today Pearson is 1 week old! It's hard to believe a week has already passed by.  Our little P gets more precious by the day! Today was a big day for us.  We got the news from Dr. Kays that Pearson's surgery is planned to take place tomorrow around 3:00.  He is not satisfied with the progress Pearson has made and thinks that in order for him to get any better, he needs to go ahead and do the repair surgery.  This was not the ideal plan as Pearson is currently on ECMO, and when surgery has to take place while on ECMO is poses alot higher risk for complications.  Unfortunately, Dr. Kays said Pearson is very sick and while he had hoped he would make some progress once he was put on ECMO, he just hasn't, so it leaves him with no choice but to go ahead and do surgery now. While the surgery is scheduled for tomorrow, Dr. Kays did say that he reserves the right to change this plan at any time.  If Pearson starts to make progress over the next 12 hours before doing surgery, then it's possible that he would postpone it.  This is a very critical and big surgery and it's very important that he plans it for the perfect time, therefore, he said it could change up until the second before he starts the surgery. It was hard for us to handle this news, but we have put all of our faith in God and we know that he is working his miracle through this doctor, so we just have to trust that Dr. Kays is making the right decision.  We need your prayers more than ever, and we look forward to delivering you all good news for a successful surgery tomorrow night. 

On a happier note....Pearson has been opening his eyes more and more each day, so we wanted to share a picture with his eyes open.  He absolutely melts our heart when he looks at us.  It is the sweetest thing in the world!!! Today, he was also sucking on his tube that they have in his mouth, so the nurse let me try giving him a pacifier and he LOVED it.  Here is a picture of him going to town on his passy! You will also notice that most of his swelling has gone down.
                        

DAY 6

It's hard to believe that Pearson is already 5 days old! It's been one heck of a week with many ups and downs.  The best thing about it all is that we haven't really had many surprises.  The doctors did a great job of preparing Matt and I for what to expect once Pearson was born, so it has really helped us deal with the many obstacles we've faced this past week.  We've had a great deal of family and friends here, and Matt and I have been so blessed to have them by our side through these first several days.  It has helped us tremendously along with all of your comments on the blog, phone calls, and text.  We still can't tell you how much all of the love and support means to us and truly helps us get through each day. 

We are still thanking God every second of the day for this beautiful miracle, and still aren't sure what we did to deserve this blessing.  We are taking everything one day at a time, as we know that things are stable right now, but there will be more set backs in the future.  Most of all, we try to focus on where this road is taking Pearson and that is home, healthy and happy with his mommy and daddy.  What a glorious day that will be.

Pearson's most current update....He continues to remain stable on ECMO. The ECMO machine is buying Pearson some time for his lungs to mature a little more, so that his lungs will be able to support his breathing a little more once taken off of it.  At this time Dr. Kays is not sure when his surgery will be to repair his hernia and put his organs in the correct place.   

I'm attaching the maternity pictures I promised, since most of you didn't get to see me towards the end of the pregnancy.  Matt and I had these pictures done when I was 36 weeks pregnant.  I am also attaching a picture of Matt and I on the morning of the delivery.  We are wearing our "Team Pearson" shirts that our wonderful friends, Cydni and Chelsea, surprised us with! They were quite a hit at the hospital! There is also a picture of Pearson and he is on all of his machines. I debated putting a picture of him on here, because I didn't want to upset or overwhelm anyone.  Just keep in mind when you look at this picture, that all of those tubes are what is keeping him alive and will get him to where he needs to be.  He is a little swollen in his face, but I'm sure you will still be able to see the resemblence between him and his daddy! He's the sweetest thing in the world!

                                               
                                                                   

                  
                                                                               




               

PEARSON MATTHEW HAS ARRIVED!!!

Unfortunately I am unable to use my computer here at the hospital, but I wanted to briefly inform everyone as to what is going on. I'm having to type this on my phone so I apologize for the shortness.

First, let me start off by telling you all that Matt and I have been blessed with a gorgeous baby boy, whom I must say looks just like his daddy! He was born March 15 @ 9:50 weighing 6.14lbs and 20.5". As we all knew, Pearson is a more critical case of CDH so we were prepared that this would be a battle from the beginning. The first 24 hours did not go well so Dr. Kays made the decision yesterday afternoon to put Pearson on ECMO, which is a lung-heart bypass machine that will do the job of his heart and lungs since his lungs are so underdeveloped. He has remained stable throughout the night, so we are pleased with that. Pearson still remains in critical condition and we are taking one hour at a time. We are so excited to now have a 2 day old baby and just thank God for the time he's already given us with our son. We are staying strong and staying positive and the faith we have in God is like no other, and we truly believe Pearson is going to fight his way through this as he already has started doing. God is hearing all of our prayers so please continue to pray. We love you all!

What A Day!

It's 1:00 a.m. and I have to be up in 4 hours! (don't forget the time on these blogs are not correct)I can't believe the day has finally come! Matt and I have had one tough and exhausting day. It has been filled with so much emotion, prayers, and love from you all and our family who are back at home and those who have traveled to be with us. I can't believe this is my last night to carry my baby safe and sound in my belly! This pregnancy has been so wonderful aside from the obvious struggles we've endured. Having him grow inside me, experiencing new feelings each day, and having this time to bond with a person I've never even met has been such an indescribable feeling. I can't even imagine what feelings tomorrow (or techniquely today) are going to bring, because I can't even imagine loving my little P more than I already do.

My c-section is scheduled for 9 a.m. We will try to update the blog tomorrow or just as soon as Matt or I can and hopefully post pictures soon too. I know it's not just Matt and I going through this...it's all the people surrounding us that love and care about the 3 of us so much that are experiencing this too, which is why we are going to try and keep you updated as much as possible.

We want you all to know that the out pour of love and support we have received today through your blog comments, phone calls, text, and emails have meant the world to both Matt and I. I have also heard from several of you that your children are praying for us and our little one as well, and I can't even begin to tell you how much that has touched my heart. They truly are a gift from God and I can't wait to receive our gift tomorrow!

Thank you all for touching our lives in your own special and unique way! We love you all and look forward to having you by our side as we begin this long and tough, but rewarding road ahead of us.

All our love,
Matt and Brandi

LAST DOCTOR'S VISIT!!!!!

You guessed it....today was our last doctor's visit before Pearson arrives! Everything went great! They did another NST (Non Stress Test) where they monitor his movement and heartbeat, and he passed with flying colors! Everything is scheduled and ready to go for the c-section on Tuesday.  Several of you have been asking what time the c-section will be, but unfortunately we don't have a time yet.  All we know is that we have to be there Tuesday morning and it really depends on Dr. Kays (pediatric surgeon) schedule that morning.  He may be tending to other babies, so they will not deliver Pearson until he is available.  I know alot of you have tons of questions about what will go on next week, so I'll briefly explain what I know so far.

To first set the whole scene up for you in the delivery room.... it will be Me, Matt, my doctor, Pearson's doctor and about 20-30 other doctors and nurses.  They have promised me that it will not be chaotic, as everyone in the room has a job and knows exactly what to do.  I can't imagine no chaos with that many people, but I'll take their word for it! Dr. Kays will already have the ventilator, I.V.'s and everything else that Pearson will need already set up next to my bed.  As soon as he comes out they will immediately stick the tubes in his mouth, hook him up to the I.V.'s, etc. Dr. Kays doesn't even want to give Pearson a chance to show him that he can't breath, especially since his lungs are so underdeveloped.  He likes to play it safe, so he will put him immediately on the ventilator.  Depending on his condition, we will possibly get to give him a quick kiss before they take him away. Unfortunately, it will probably be atleast 2 weeks before we can hold our sweet little guy. This is because of all the machines he will be hooked up to. We don't even realize the smallest things we take for granted like holding our baby when they are born, until you are in a situation like this.  That will be a day I can't even put into words how happy we will be. We already know that Pearson is considered on the critical side for a baby with CDH since he has both his liver and intestines up in his chest.  He is also predicted to be missing about 90% of his diaphragm, which is why these abdominal organs have herniated into his chest, preventing his lungs from being able to grow and develop properly.  CDH babies have what the doctors call a "honeymoon phase" which is how they describe the first 24 hours, give or take, of their life. They call it this, because the babies seem to be doing pretty good during the first hours of thier life, but sometime in the first day or two everything will start to go down hill and this is where the roller coaster begins.  It is literally an hour to hour process.  You have no idea the changes that will take place from one minute to the next.  He can be doing really well one minute and the next he could be struggling for his life.  He will have surgery to fix his diaphragm and put the liver and intestines in the abdomen where they belong.  They hope to be able to do this in the first day or two, but it all depends on how stable he is. They predict the first 4 weeks to be the most critical, and Matt and I are so fortunate to be able to be here together during this tough time. I don't think one of us could do it without the other. God has truly blessed me with the most amazing husband and the most wonderful father for our baby, in the world. 

With all this being said....Matt and I want you all to know that we are doing really good at this point.  God has given us the greatest peace about everything, and we know without a doubt that we will be bringing Pearson home to meet you all one day. We are very positive and so happy about getting to meet our beautiful son in 4 days!!!!! We were very scared and nervous, but we are more happy than anything and we want you all to feel the same way.  We know that God has heard all of our prayers and we know he is going to answer them.  He has already answered so many and Pearson isn't even here yet.  We absolutely can't wait to show him off when we get home!!!!!

This may be my last post before the big day on Tuesday, since our family will start arriving tomorrow! I've been gone for 5 weeks now, so I have ALOT of catching up to do when everyone gets here.  I can't wait!!!!!! We have the greatest family and set of friends EVER!!!!!

This is a picture of me today at our last doctors appointment.  I have to sit on this machine for 20 minutes, so Matt had some fun with the camera and yes...the video camera.  He's starting early with the videos! I'm afraid he's going to want to video tape Pearson's every move once he gets here! LOL! I'm hooked up to the NST in this pic! Some of you wanted to see how big my belly has gotten too, so here you go! Matt and I also had some maternity pictures made a couple of weeks ago, so I'll try to post some of those in the next few days when I get them!

I see more people have found our blog! We are so elated to see that so many people care about the three of us! We love you all and thank you again for the comments! Your kind words mean so much to us!

Lunda and B.B., Matt appreciates the yellow jacket idea, but I definitely think he needs a bulldog too, Connie!!!

A Day In The Life Of The McClain's

Just wanted to share with you all how we spent our day.  After sleeping in this morning, (we are enjoying this while we can!!!) we started working on a name plate that we wanted to make for Pearson while he is in the hospital. We wanted him to have something cute to hang on his incubator, so all the nurses know what to call him. Unless it's Dr. Kays, who already told us that some days he might call him "little shit" depending on how well he's cooperating. You've got to love a doctor with a sense of humor!!!  Jennifer, one of the other CDH moms, gave me this great idea. Thanks, Jennifer! Matt told me to be sure and let you all know that he did ALL the painting. (except for the giraffe....it came already painted and we actually have several other animals that we bought to change out each day/holiday since we are putting them on with velcro) but I bought all of the stuff and I helped put the letters on, so I had a part in it too! All we have to do now is hang the ribbon from the top, so it's not completely finished! After doing this, we sat outside and lounged in our chairs for a little while (75 degrees, sunny, with a little breeze.....PERFECT!!!), and before we knew it, it was time to start grilling out supper.  Thank God Matt is an awesome griller, otherwise we would be eating the same thing every night! LOL! Now we are just hanging out in the camper and trying to find something on T.V. to pass the time until it's time for bed. Tough life, I know! We are enjoying it while we can, because it's all over with next Tuesday!!!!

We also want to thank you all for the comments so far! You really help brighten our days!!!

FYI, I'm sure some of you have noticed, but the time on these post and on the comments posted are not correct.  The dates are right, but we can't figure out why the time is off.  The time shows 3 hours before the real time, so don't pay attention to what time the posts are made. For example, it's 11:25 right now, but it will say that I posted this at 8:25. No big deal...just wanted to let you know.

Today's Doctor Visit

We went to the doctor today, which Matt and I were pretty excited about.  It's funny the things you start looking forward to when you have no other priorities.  We were so glad to actually have somewhere to be this morning! Anyways....everything went good.  For the last 3 weeks they have been monitoring Pearson's movement and heartbeat with a special monitor instead of checking on him through ultrasounds, which is what they have done the rest of the time.  Both his movement and heartbeat looked good, so we are still on track to deliver in 11 days!!!! One more doctors appointment, which is next Friday, until he's here!!! I'm not sure I'll know what to do not having to go to the doctors atleast once or twice a week! I think I'll manage though! LOL!

It was also nice to see some new faces today.  Grandma and grandpa Berlage came to take us out to lunch since they are at their place in Steinhatchee, which is only about an hour and half away. We are getting really excited about meeting our little guy and seeing all our family and friends soon!!! We are so glad to see people are finding our blog. Thanks for all your comments! Matt and I really enjoy reading them!

Getting Settled in Gainesville!

As you may know, I had a preterm labor scare in January when I was only 31 weeks pregnant, so instead of moving down to Gainesville at the end of February like we had originally planned, the doctors wanted me closer to the hospital in Florida right away. I moved to Valdosta on February 6th to stay with some of my family. Luckily my mom was also able to travel and stay with me for the 3 weeks I had to be there until Matt came down at the end of the month. It was nice spending time with family and having my mom there meant so much.  I don't think I would have made it that long away from home without her.  The whole time, however, I was counting down the days until Matt would be able to come down and we could be together again.  Finally, last Thursday he made it to Valdosta and we made our way to Gainesville on Friday.  We have now been at the campground where we will be camping for the next several months for almost a week and we are getting settled in.

 Thanks grandma and grandpa for the camper and helping us get settled!

Now we are just trying to occupy our time until the big D-Day! MARCH 15TH!!!! Each day it gets closer, the harder it seems to get.  It's something we've talked about, planned for, and prayed about for so long, and it's finally almost here.  It's almost surreal that everything is about to happen and so many prayers are hopefully about to be answered.  We are still taking one day at a time and dealing with what comes our way.  We have been so blessed by all of the love and support you all have shown, even just since we've been down here.  It's not easy being away from all the people you love and care about, so talking and hearing from you all has really helped.  We are looking forward to seeing alot of you in a couple of weeks!