HAPPY HOLIDAYS! I'M 9 MONTHS OLD!

WOW!!! Has it really been 4 months since I blogged!?! I apologize in advance if this post sounds scattered. Pearson has himself on a new schedule where he goes to bed at midnight, so that leaves me trying to update the blog at all hours of the night. Believe it or not I've been working on this for over a month! I have lots of news to share! I'll start where I left off in August....

Shortly after I blogged last time we had a little scare. Pearson seemed in a great deal of pain when I would feed him through his tube, and had a small amount of yellow bile coming out of his mouth. We knew this wasn't good considering he has a nissen (the surgery where they wrapped the top of his stomach around the bottom of his esophogus to prevent him from refluxing, burping, spitting up, etc.) Although it's not a guarantee that nothing can come out of his mouth, it's highly unlikely. He continued to be in pain for bout 4 days and lost almost a pound.  Dr. Kays said he had signs of a bowel obstruction and wanted us to come down right away. If it was an obstruction he would need another surgery. The thought of him going back into the hospital was almost unbearable, but like Dr. Kays has always told us in the past, if something does happen in the future and he needs more surgeries, we should just be thankful that he made it through the worst of it in the beginning to even need those surgeries later. Speaking from experience, you have to look on the bright side of everything or you will fall apart. We packed in a hurry and got on our way to Gainesville. About half way down Pearson started eating like normal and showing no signs of pain when feeding him through his tube. We could NOT believe it. We talked to Dr. Kays on our way down and he said to go ahead and bring him so he could check him out. Needless to say, Pearson just missed his favorite doctor and wanted an excuse to go see him because he continued to do well the rest of the trip. After x-rays and some test, he didn't see anything wrong with him and chalked it up to being a virus or an upset stomach from an antibiotic he had been on. Unfortunately, that is one of the down falls to tube feeding, because like a normal baby who didn't feel good, they would just refuse a bottle, he can't really show us that he doesn't feel good and just doesn't want to eat without us thinking something must be terribly wrong. We were just so thankful that we were able to get GOOD news when we got down there.

Pearson is currently doing therapy once a week at home with an occupational/physical therapist. Some days she works on his feeding and some days more on his motor skills. I generally try to feed him once a day. At one point he was taking a good 15 or so bites of baby food a day. The most I've ever gotten him to eat was 3 quarters of a container of sweet potatoes! Matt and I threw a party when that happened! I think it would be safe to say that sweet potatoes along with bananas are his favorite! He absolutely hates peas and apples! With all of that being said, I have actually stopped feeding him as much over the past couple of months because he has had bad sinus trouble along with double ear infections, upper respiratory infections, the croup and most recently the FLU! Yuck!!! This makes the 4th time he's been sick since the cold weather got here a little over a month ago. Its going to be a long winter! Along with all of his illnesses came a very sensitive gag reflex, which had really improved for him prior to the weather changing, but now he's not interested at all in the food since he's started having runny noses, coughs, infections, etc.  Needless to say, he has regressed from how good he was eating at one point. As for his tube feedings, a couple of months ago we started feeding him every hour and a half to prevent him from retching and it has helped tremendously with his reflux. He eats about 2 ounces, eight times a day, with an hour and a half between each feed. He is still on his feeding pump at night and sleeps great. He is now up to a whopping 12.15 lbs!!! We are so excited about his weight gain. He has really hit a growth spurt since turning 6 months, and he is 9 months old today....can you believe it!!!

HALLOWEEN/THANKSGIVING....We had a great Halloween! Pearson was a "Corduroy Donkey." He loved his costume! He was so adorable and actually kept his costume on for a good hour or two while we did pictures and went Trick-or-Treating. It was also a special weekend for Matt and I since last year on October 29 was when we got the news that something serious was wrong with Pearson. We found out on a Friday, so we had to wait the whole weekend until we could see the perinatologist to find out exactly what was wrong. Matt and I literally walked around the house that entire weekend in shock. All we could do was stare into space. I don't even think we turned the T.V. on for days. Needless to say, this Halloween was WAY WAY WAY better!!! We are really looking forward to an amazing holiday season with Pearson, although on Thanksgiving he ended up being sick with a double ear infection, respiratory infection and the croup for the second time this month, and although we had to cancel our Thanksgiving plans, all we cared about was that we were spending it with Pearson. Christmas will be indescribably good just being able to share it with our sweet baby, instead of worrying like last year about whether we would even have Pearson here to spend the upcoming holidays with. We thank God so much for the blessings we've received this year and continue to be blessed with each and everyday! Matt and I look at Pearson everyday and still can't believe we have such an amazingly sweet and beautiful baby and the love we have for him is like no other. It was really sweet, a few weeks ago actually, Matt was holding Pearson and talking to him and said, "you will never know how much daddy loves you until you have a kid of your own." I have to say, he's exactly right! There's no other feeling or love like it.

To bring you up to date...In November we traveled to Gainesville to see good ole Dr. Kays. We have GREAT news.....Pearson is FINALLY off of his oxygen!!! I think he is just as excited as we are, because he hated those silly cannulas. He was also able to come off of 3 of his 6 meds so we are super excited about that too! We are due to go back in February to get chest x-rays and an echo cardiogram to check and see if the hole in his heart is gone. To remind you about that, he has 2 holes, one of which is very important that it closes or he will have to have heart surgery around when he's a year old. When they checked it in July it appeared to be smaller so we are praying that it continues to do so. We would be very grateful if you would join us in doing the same. As we all know...God hears our prayers.

What's Pearson up to these days?!?  Over the last several months Pearson has shown tremendous progress! Here are some of his new tricks and favorite things to do....

~He loves to play with his feet and eat them! I don't know why, but I think this is the cutest thing...oh wait, that's with everything he does!
~He chuckles all the time at such silly things... like me fake sneezing or saying "HoHoHo" like Santa!
~He said his first word in October which was "MOMMA"... I was ecstatic! I had to record it because I knew Matt wouldn't believe me! However, he has become quite the daddy's boy here lately. Matt absolutely loves it! He also says "Bye Bye" and he's just starting to try and wave.
~His newest thing is that he really wants to sit up, but he's not quite strong enough to hold himself up, however it won't be long! With this sitting up thing also came the discovery of his g-tube in his stomach. He loves to sit up and look at his belly while we are feeding him and grab and stare at it. 
~He has also recently started reaching for you when he wants you to hold him. This is one of our new favorite things that he does!
~ He likes to shake his head "NO", although he doesn't quite know what it means since he never hears that word...atleast for now. Lol! The one time I did actually try to get on to him and tell him "No No," he laughed at me!
~He loves to play in his excersaucer, which is kind of like a stationary walker for those of you who aren't sure what that is. He also likes his newest toy, which is a jumperoo. He loves to play in it and he's getting pretty good at jumping! Both of these toys are really good with helping him gain strength in his back and ab muscles as well as coordination. Building up his strength is one of the main things we are working on so he can do more things like sit up, etc. He still hates tummy time and won't stay on his belly for more than a minute or two, which means crawling probably isn't going to happen in the near future.
~For the past several months he has been putting everything in his mouth to chew on, and believe it or not, sometimes even food! We have been waiting for him to get some teeth and this week he actually cut his first tooth! He loves to chew on pickles and he likes to eat baby cheetos occasionally. We were pretty happy to see that he would put stuff in his mouth...especially food.  It gives us hope that he might be willing to put more food in there one day!
~One big change since coming home from the hospital is he actually loves and wants to be held all the time now! This is much different from when we first came home from the hospital. He hardly ever wanted anyone holding him, even me and Matt.  I guess from when he was in the hospital bed all the time, he was content in his swing or bouncer. Not to mention, when he was on oxygen it made it a little difficult to hold him, because we were confined to a small area and couldn't really walk around with him. It's so wonderful having the freedom to walk around the house with him on my hip and not having to worry about pulling an oxygen tank around. I remember thinking all the time, "I can't wait for the day when I can actually carry him upstairs/downstairs, to the kitchen, outside etc. with me." It's the small things in life that mean the most!
~Overall, Pearson truly is a great baby. Hardly ever is he not in a great mood and smiling. He has a great disposition and will melt your heart with his big, beautiful blue eyes:-)
          GOD HAS TRULY BLESSED US!
I hope you all had a wonderful Thanksgiving and have a VERY Merry Christmas! We continue to be so very grateful for all of your prayers, love, and support.  I look forward to sharing more wonderful holiday memories and pictures with you all! I'll try to blog a little sooner than I did this time:-) I promise!


Merry Christmas
Much Love From The McClains

There are those beautiful blue eyes I was talking about!

Fall Pics

Fall Pics



Me and mommy at the pumpkin patch!

Me and daddy at the pumpkin patch!

He didn't like sitting with the pumpkins too much!





Happy Halloween



Sitting with my daddy while we wait for our appt. with Dr. Kays

My favorite thing to do....chew on things!

This was the other day...sleeping babies are the sweetest. He can't go anywhere without his "lambie."

Getting my first Christmas tree!


Me in my Christmas pj's



I'm almost 5 months old....Can you believe it!!!!

Hi Everyone! I want to start off by apologizing for not updating you all as often as I should.  It's so hard to make myself get on the computer after a long day with Pearson, and now my 2 year old nephew, Stephen, whom I am keeping. I am obviously unable to work with all of Pearson's special needs at this point, so keeping Stephen allows us to have some sort of extra money to make up for me not working. I feel incredibly blessed to be able to stay home with Pearson, but I'm willing to make whatever sacrifices it takes to be able to be home and kiss and squeeze and love on my precious angel ALL day long! I tell Matt all the time...." I really think I could just sit around and stare at him all day!" Pearson that is! Lol! We have been having the best time watching him grow and change.  He is doing so good holding his head up and building his strength.  He is trying really hard to roll over and squirms around all the time.

As you may remember, we made our way back to Florida to see Dr. Kays and the cardiologist a few weeks ago.  The cardiologist checked to see if the blood clot in Pearson's heart was gone and it WAS!!! This means NO MORE SHOTS!!!!! Dr. Kays was also so excited to see him and was very pleased with Pearson's progress. We love our Dr. Kays and as always, it was so great to see him. We were really looking forward to this trip because even though Pearson sees his pediatrician at home all the time, it's almost a sense of security once Dr. Kays gets to see him and says everything is okay.  We know that when he says that, then everything really is okay.  He's the only one that knows everything that Pearson has been through, so getting a report from him is always great and reassuring. He said Pearson will probably be on oxygen until atleast September, which we were happy to hear. Pearson gets more and more aggravated with those tubes and cannula's on his face everyday.  Not to mention he's getting stronger and more aware of his hands so he pulls at them all the time.  It's so hard to keep them taped on his face at times.  And the million dollar question....Is he still feeding through the g-tube??? YES he is! Alot of people ask if/when he will be off the g-tube, and to answer everyone question, we really have no idea unfortunately.  Only God and Pearson know the answer to that.  It all depends on Pearson and when he decides that he is ready to take a bottle by mouth.  I am still pumping my breast milk so I try to nurse him as well as give him a bottle daily, but we still haven't had any luck.  I don't think he has really made any improvement at all.  He still gags really bad as soon as you put something in his mouth and completely refuses to suck on anything but his fingers.  We are still so ecstatic that we are even at home with our precious baby boy that we are perfectly fine with Pearson learning and doing at his own sweet little pace.  He has come so far even just since we got him home and we couldn't ask for anything more. Can you believe he is almost 5 months old!!!! I certainly can't!!!

One of the other big things that Dr. Kays told us was that Pearson can now venture out of the house and into the real world! We were super excited to hear this, because there are so many places that we can't wait to take him.  One of those places being church.  Matt and I have dreamed about the day that we would get to go to church as a family. The last time I went to church was the week before I got put on bed rest in January and it was a Sunday I'll never forget.  Everyone in the church met at the alter to pray for Pearson and it was so ironic that this would be the last time I would be able to go to church before he was born.  What can I say...GOD answers prayers! Last week I was able to walk into that church holding my healthy, beautiful baby instead of carrying a very sick baby in my belly.  It was so great to share Pearson with all of our wonderful and loving church family who have been there for us and prayed so diligently for our family.  We look forward to many, many more great Sundays!!!

First Day at Church



My new favorite thing....blowing bubbles!



I've found my hands

Heading home from Florida....I was such a trooper!

Look how strong I am...I can lift up my legs now!

Hanging out in my stroller at Dr. Kays office

Hanging out on the counter while mom cooks dinner!

These are all pictures that my aunt, who is an amazing photographer, took of Pearson.

Our 1st month at home!

Hello everyone!!!!! I am sooo sorry it has taken me so long to blog again! Things have been VERY busy, but GREAT!!! I can't even describe to you that feeling when we were finally able to walk out of those hospital doors with Pearson.  Of course I was crying, but most of all I just wanted to savor the moment.  It was unlike any feeling I had ever had.  It was a day we had been dreaming of and it had finally come true. Every day we would arrive at the hospital to go be with Pearson we would always talk about the day when we got to leave that hospital as a family, so this was a much anticipated, very surreal moment. Pearson cried most of the way out of the hospital and the fresh air caught him by surprise.  His eyes were squinty from the bright day light and I can't even imagine what he was thinking.  The car ride home was good.  It was a little hectic just because not only was that the first time we were on our own and feeding him with his g-tube, but we were in a packed car as well. 

Pearson is adjusting so well to his new home. He came home weighing 8.6lb/22 inches and is now up to 9.14lb/23 inches. In between all of the visitors we have been trying to get him on some sort of schedule. He is eating 3 ounces every 3 hours through his g-tube and came home on 7 different medicines.  We definitely have our work cut out for us, but it is ALL worth it!!! He has been sleeping in his crib since the second night we were home....of course the first night I was dieing to snuggle with him so he slept with his mommy and daddy! He hasn't really been anywhere except some of our friends and families homes and to the doctor.  He is still on his oxygen 24/7 and being fed through his g-tube.  We work everyday on his oral feeding, but he absolutely hates anything in or around his mouth.  I've tried nursing and bottle feeding and he hates both. He was sucking a passy before we came home, but stopped about a week before we were discharged. When we try to feed him he wretches alot and often does it while he is getting fed through his tube as well. I guess that is just part of his terrible reflux and oral aversion.  It's tough to watch sometimes, because I know how frustrating and aggravated it must make him. We have tried giving him milk through a surrenge and he handled it okay.  He cried, but still was able to swallow without gagging the whole time.  He is seeing an occupational therapist for his feeding and right now she is just having us do some mouth exercises with him at home as we try to get him to associate positive things with his mouth, since everything else that he has ever had in his mouth has been very negative, such as the ventilator.   He will also be working with a physical therapist soon, although he doesn't seem to be too far behind where he should be at almost four months old. We have been to lots of doctors appts. just so the pediatrician can keep a close eye on him.  As you may also remember, right before we were discharged they found a clot in Pearson's right atrium. He is doing Heparin therapy to prevent the clot from getting any bigger.  He has a port in his leg that he receives 2 heparin shots in each day.  We have to change the port out once a week, which is one of the hardest things we have had to do since being home.  It is basically  like giving an IV, except you don't put it into a vein. We are really hoping that when we go back to Florida for all of his check ups in a couple of weeks that his clot will be gone so that we can stop with the shots.  We are really looking forward to going back to Florida as funny as that may sound since we only spent 4 months there.  We really miss all of our WONDERFUL nurses and plan to go see alot of them while we are down there.  They really became like family and we just thank God that Pearson had such loving and caring people to take care of him during the first part of his life.  We will forever cherish all of the memories and friendships we have made on this journey in Gainesville. We look forward to keeping in touch with alot of them, and one of these days I'm going to get a Facebook page so that it will be easier to do so! We love you guys in Gainesville and miss you tons!!!

Pearson does new things everyday and amazes us all the time.  He has discovered his tongue and is now discovering his hands.  It is the cutest thing watching him change and grow. He will just sit in his swing, which is his FAVORITE place to be, and stare at his hands like "are these really mine!" He is such a happy and strong little boy and brings so much happiness and joy to our lives.  We are having the best time being parents and feel so incredibly blessed to be at home with our precious angel. We still can't believe we are at home as a family.  There was a long period of time when we didn't know if this time would come and we are grateful for each day God gives us with our beautiful baby.  He is truly a miracle from our wonderful and almighty God!

Here are some pics from Pearson's first month at home!!!

Leaving the Hospital!!!!!!!!

Waiting on the curb while daddy gets the car!

I'm headed HOME!!!

Me and daddy slept in our first morning home!

My first doctor visit...

I LOVE my mobile!

My crib...

1st Stroller Ride

My favorite place to be....my swing!

I also love my playmat!

I'm starting to get used to baths, but they aren't my favorite!

I'm glad bath time is over!

I found my tongue!

Caught without my oxygen! (mommy was changing my cannulas) You can see his scar and g-tube in this pic.... for those of you who are curious as to what it looks like.  You can also see his port in his leg where he gets his shots.



Cindy, with Cynthia Sparks Photography, took these beautiful pictures of Pearson.  She is also the wonderful person who did the "Pictures for Pearson" benefit for us.  She does an amazing job!!!





Home Sweet Home

WE ARE HOME!!!!!!!!! We made it home late last night! It was last minute that we were able to be discharged! I will elaborate on everything later, but for now I'm going to try and get some rest! My 3 and a half hours of sleep from last night are really kicking in! It's been a great first day at home! Things couldn't be better!!! I will post more soon....just as quick as I catch my breathe! Love to you all from The McClain House!!!

Another bump in the road...and it's not on interstate 75!

Well, unfortunately I'm not posting this from home. Yesterday Pearson had several test done to get ready for discharge and when they did the echocardiogram they found a clot in one of his arteries...most likely from being on ecmo. They are going to treat it with heparin therapy, which is where they insert an IV looking thing in his leg, and that is where they will put the heparin through with a shot. He will have to also come home with this and Matt and I will continue the heparin at home as well as follow up with a cardiologist. We are hoping to leave sometime next week, but it's too early to tell. Although this has been a set back and we hate that Pearson has to go through this, we also feel so blessed that they found it before something worse could have happened. We want to take Pearson home so badly, but not until he's healthy and ready. We love you all and appreciate all of your continued thoughts and prayers. 

10 Weeks Old!

It's 1:30 in the morning so I'm going to make this quick, but I wanted to update you on what's going on. We are still planing to leave possibly Thursday or Friday! We are praying it's Thursday, but hey, what's one more day! They have to do all kinds of test before they discharge, so Pearson has several of them scheduled for tomorrow. LeeAnn, I know what you mean about all these test! We will also be "rooming-in" tomorrow night, which is where we stay in a room inside the NICU overnight and take care of Pearson on our own, but with the nurses guidance and assistance when needed. This means that Pearson will be staying with us!!! I'm SO excited! We will have to practice feeding him through his g-tube and all of that good stuff. Things are moving right along and Pearson is handling it all so well! We are getting super duper excited about coming home! Some days I have to remind myself of what my house looks like! It's been 4 months since I was home!!! I'm more than ready to be there and show Pearson where his home is as well! Praise GOD for getting us to this much anticipated day!!! Maybe the next blog will be from home!!!

We are all smiles these days!

I just wanted to share some cute pics we've gotten in the last week or so, and also let you know about Pearson's progress! You will see that our little guy is smiling all the time now! I can't get enough of it! About his progress... He is recovering well from his surgery! They started giving him milk through the g-tube yesterday and he's tolerating it well. Today he was able to try a bottle but had no interest what so ever. I've been told that they do much better with oral feeds once they get home in a more comfortable environment, so we aren't stressing over it at this point. He is not on the regular oxygen just yet, but will hopefully be on it soon. He will need to be doing good on the regular oxygen and tolerating his feeds well before he's ready to go home. The plan is still for us to be able to leave sometime late next week!!!!! We are getting SO excited! Thinking about getting to share him with all of you brings tears to my eyes. This is a time we have waited for for so long and on some days weren't sure if we'd ever make it this far. We praise God for everyday he gives us with this special gift we call Pearson. He truly is a miracle and no matter how long we have to spend in this hospital, it's worth every second we have with him!

We want to thank you once again for the love and support we can feel from all of you back home and even those of you who we've met along the way! We have received so many cards, gifts, yummy treats, visits and sweet thoughts from a lot of you and we want you to know how much it all means to us...even just knowing that you care enough to want to follow our blog means the world. You really help make a difference in our lives everyday and we love and thank you for it!  

                                                              

Day After Surgery

                                                    
                                               

Happy as can be....especially when someone is holding me!