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!

Road to Recovery

I am very sorry I'm just now updating you on the surgery. The blogger has been down and wouldn't let me post anything new. Yesterday was a great day of progress! Pearson's surgery went good! They saw that he has a very small stomach so they will have to take feeding him very slow. Sunday they should be able to introduce his stomach to milk with continuous feeds and let it slowly stretch. Monday we can start trying him on a bottle. Prior to the surgery he was being fed with a tube that went down his nose, bypassing his stomach and going straight to the intestines, which is why his stomach needs to stretched and gradually fed a little at a time. He is definitely on the road to recovery and will hopefully be on the road HOME very soon!!!! God has answered our prayers once again and continues to bless us everyday with an incredible support system!

Also, I am just now realizing that most of you probably had no idea Pearson was having surgery yesterday. I blogged Wednesday night about it, but I see now that for some reason it never posted for you all to see. I am so sorry for this misunderstanding...I have no idea how this happened. Hopefully you are all up to date on everything now!

Update

I just wanted to update you all on Pearson's progress this week. The fluid on his lungs seems to be going away, so he is on the schedule for surgery tomorrow.  We are very eager to get this surgery done and get him home, as I'm sure you all can imagine, but just like everything else so far, timing makes all the difference and now seems like the perfect time to fix his reflux and insert the G-Tube.  We aren't yet sure what time it will take place....all we know is that it's about a four hour surgery.  He will be re-intibated for the surgery (back on the ventilator) and will probably have to stay on it for a day or so since his lungs are so small and weak. Once he is unsedated and breathing on his own again he will be back on the regular oxygen, which he will be coming home with. We can feel all the prayers you all have sent up for Pearson this week as he has continuously gotten better each day.  He was pretty fussy and unhappy over the weekend and early in the week, but he seems much happier and is smiling a lot more.  We look forward to those smiles everyday, as he grows, changes, and becomes much more alert and aware everyday.  We are having so much fun watching him grow and change.  It really makes us look forward to all the fun we get to have and all the many things we get to teach him when we get home as he continues to grow and learn! Remember us in your prayers tomorrow! Love and Hugs to you all!

Postponed Surgery

Just a quick surgery update....Pearson did not have the surgery today. It appears that he has some fluid on his chest where he could have possibly aspirated sometime in the last few days. They are hoping his body will get rid of the excess fluid and surgery can possibly still be done towards the end of the week. If anything, this happening only confirms that we are doing the right thing by going ahead and doing the surgery to fix his reflux. I will keep you posted when we know more. 

Day 55...Happy Mother's Day

Happy Mother's Day to all of you wonderful mothers! I hope everyone had a special day! I have had a wonderful Mother's Day and feel more honored than ever to be Pearson's mother and to have him here to celebrate this special day! 

On to Pearson's progress...unfortunately he hasn't made much progress with his feeding. He is resisting it more than ever and we feel that he is probably in pain from the reflux, so Dr. Kays feels like we have explored all other options and he is confident that surgery is what needs to happen in order for Pearson to progress. He will be getting a Nissen done which is when they go in and wrap the top part of his stomach around his esophagus in order to tighten it and prevent him from refluxing. This is something he will always have. They will go in through the incision he already has from his previous surgery, but will have to make it longer in order to get to the right area in his belly. He will also be getting a G-Tube which is how he will be fed for a little while or at least until we can get him home and continue working on the nursing and bottle feeding. He was getting the hang of it pretty good before so we think he will not have to use the tube for long. Dr. Kays is planning to do the surgery tomorrow and then we will hopefully be home in about two weeks!!!! This should be our last hump we have to get over. We are having a hard time grasping the idea of finally having such a short time frame before we can go home, but we are absolutely ECSTATIC!!!!! We are looking forward to seeing so many of you very SOON!!! We thank you so much for the continued prayers and hope you will continue to pray for a successful surgery tomorrow! We know God is the only one who can bring us through this, so we must continue to rely on Him. 
 

The results are in....

We received the results from Pearson's upper GI test and I'm afraid it wasn't good. He does have a significant amount of reflux and will possibly need the surgery to fix it.  Right now they have increased his dose of reflux medicine and changed his feeding schedule.  Instead of offering him 40ml during the day by bottle and putting what he doesn't eat into the feeding tube, they are still giving him the same amount in the bottle, but not putting the remainder in his tube in hopes that this will allow him to get hungry so he will want his bottle more.  They want to see what he is capable of before making their final decision on whether he needs the Nissen and G-Tube.  The Nissen will fix his reflux and the G-Tube will be to feed him through with a tube.  The good thing about going ahead with the surgery and getting these procedures done is that we know his reflux would be fixed and his chances of aspirating into his lungs will dramatically decrease and with the G Tube we wouldn't have to worry about stressing to get him to eat a certain amount by mouth.  The nurses have told us that once he gets home in a calm, quiet, and comfortable environment he will learn to eat much better than he will sitting in the NICU, so we aren't going to overly stress about that.  Not to mention, it's just not good for his underdeveloped respiratory system to be over worked just to drink a bottle.  It literally wares him out to drink a bottle most of the time, and he still isn't getting what he needs to be getting in order to gain or even maintain his weight, which is why he still gets fed through the tube in his nose.  If they decide to do the surgery it would most likely be sometime next week, but that's not set in stone so anything can change. Once they do the surgery we would only have a week or two left before we could LEAVE!!! We know God has a plan for our sweet little monkey, and we pray that his will shall be done no matter what it may be.  When I heard the results today it absolutely broke my heart all over again to think that Pearson might have to go through yet another surgery, even though it is super minor compared to what he's been through, it never gets easy to watch your sweet, innocent, and helpless baby have to go through one thing after the next and I'm almost to my breaking point with watching him go through so much pain and discomfort.  At the end of the day I have to remind myself that I just need to be thankful that I'm able to go through this with him, because that means that he has made it through everything else, and not all CDH parents can say that. Pearson is truly our HERO! Please continue to pray for us and our family. We can always use your prayers.

7 weeks old...I can't believe I'm saying that already!!!

I just wanted to give you a quick update...the upper GI test got postponed until today. They did it this morning, but we are still waiting to get the results. Yesterday was a tough day as Pearson wasn't really interested in taking any of his bottles. The most he took all day was 10ml and had a very fussy evening, which kept us there until almost 2 in the morning trying to console him. We are very fortunate to have my mom here to help us out and share some of the time at the hospital with us! Especially after nights like those when we could use a few extra hours of sleep, but yet we want someone there for all of his feedings. If it weren't for her I think we both would be pulling our hair out by now! Today on the other hand was a much better day! Pearson drank two full bottles of 40ml which he's never done!!! He also sleeps about 23 hours out of the day, or atleast it seems that way, but today he was up for 5 hours straight, so we got to see those beautiful eyes of his a lot more! I think I could stare into them all day long and just thank God for the beautiful miracle he has blessed us with. He brings so much joy to our lives every single day and just makes us so excited for what the future holds! 

A good ending to an eventful weekend!!!

What a weekend! We have continued working on the feeding over the weekend and there were some changes made yesterday. They started stopping Pearson's continuous feed that he was getting through the tube an hour before his bottle feed that he gets every three hours. This is to allow him the opportunity to get hungry where he will actually want the bottle. We didn't see any changes yesterday except for the fact that Pearson seemed much more fussy and cried every time we would try to put a bottle even near his mouth, which started making us think that there might be something internally wrong with him.  Needless to say it was a very frustrating Saturday, but things made a turn for the better tonight.  The most Pearson had drank all weekend was 8ml until tonight at his 6:00 feeding when he ate 30ml, which is the MOST he has ever drank. Then he REALLY surprised us during his 9:00 feeding when he drank the entire bottle of 40ml, which meant no tube feeding for that three hours!!!! We were all celebrating....including the nurse!!!!! We are once again thanking God for yet another day of progress!!! We continue to put all our faith in Him, and He continues to bless us everyday! We are praying that Pearson receives good news from his upper GI test tomorrow when they go in and check to see if or how bad of reflux he has.  Let's all pray together that he doesn't have reflux and that he will not need anymore surgeries!

We also want to say THANK YOU to all of you who helped in any way, donated your time or money, or just made an appearance at the CUT-A-THON today! I have heard nothing but great things about it! We wish so much that we could have been there to see you all and be a part of the excitement! I hope you all got some nice hair-do's!!! You continue to amaze us with all of your love and support!!! We love you!


                       Pearson's 1st Easter

I love hanging out in my bouncy seat!!!

                       Most recent pic... taken today

I could hold him ALL day long!

What a look!

What a sweet face!!! This was taken today as well.

What a mess...wires everywhere!!!