Day 45

As you know, we are now in the NICU 2 and mainly focusing on Pearson's feeding.  He started out at 5 ml every three hours and is now able to get 20ml if he will take it.  He's still getting all the food he needs through his feeding tube, so he's not really hungry. We are mainly just working on getting him to take a bottle and learn how to suck, swallow, and breath all at the same time.  I definitely know why all the CDH moms say you must be patient throughout this part of the recovery, because it is a VERY slow process teaching and getting these babies to eat. We have an occupational therapist working with Pearson now and she has been alot of help.  He started out taking 5 ml from the bottle and has taken as much as 20ml now.  It's very rare that he does this, but he HAS done it. Getting him to take a bottle at all can be a challenge, but we know he will get there eventually! Dr. Kays wants him drinking 60-70ml before he can go home, which means we still have a ways to go. We try to be here for most of his feedings, because the nurses have told us that the least amount of people feeding him the better and the sooner he will be out of here! If they had a place for us to sleep I think we would just stay all night, especially if it meant getting him home sooner! Lol! I'm sure I've mentioned it before, but alot of CDH babies end up having reflux problems, so Pearson is going on Monday to get an upper GI done to see if he is going to have any problems. Usually when a baby has reflux problems they will do another surgery and insert a tube into his esophogus to help with the issue.  We are praying he doesn't have bad reflux, but it's definitely not anything we can't handle.  We are just SO thankful to God that he is here with us today.  We hope you all will continue to pray for Pearson's continued healing and that his organs will work the way God intended them to.  I would also like to ask you all to pray for this nice family that arrived from California to have thier CDH baby cared for by Dr. Kays. He was born on Tuesday and I just pray that God will give this family and thier baby the strength and comfort they need to overcome this terrible illness. I  certainly know that He is the reason we have made this far!

In regards to the "Love Offering" from our church, Pearson bracelets, Cheryl's cakes as well as the upcoming Cut-A-Thon, "Pictures for Pearson," and golf tournament, we can't even begin to express our thanks and gratitude for all you have done and continue to do to help make this time in our life a much easier and pleasant experience.  Matt was supposed to go home four weeks after Pearson was born, but with all the help and genourosity of our family, friends, church, and community, you all have made it possible for Matt to stay longer and get to hold our precious son everyday and be with me through this time of continuous progress.  I know it doesn't sound very stressful or like much that we are just trying to get him to eat now, but it can be really stressful and overwhelming at times, which makes me so very thankful that Matt is here to go through it all with me. We live in the best community and are surrounded by the greatest, most loving and caring people in the world.  We feel so blessed to have each and every one of you in our life, and we are so humbled by all that you have done and continue to do. We hope to somehow repay you one day.

One Step Closer to HOME!!!

WOW, what a big weekend it's been! I have lots of great news to share with you! On Friday we were able start giving Pearson a bottle with 5 ml of milk and I was able to attempt to nurse him or at least introduce him to the idea since we pretty much knew he wouldn't have much interest. He is still getting food through a tube, so he doesn't get hungry right now, which makes the bottle feeding more challenging.  He does great as far as not spitting the milk back up, but he doesn't have a lot of interest in drinking and sucking, especially since he hasn't had to eat by mouth ever in his life. It will be a very slow process, but I know he will get where he needs to be eventually. Tomorrow they will start giving him less food through his tube, so that he will hopefully be more hungry and want to drink his bottle more.  They did increase his milk to 10ml today, so hopefully they will be able to continuously go up on it. Something else great that happened this weekend is Pearson was able to graduate from NICU 3  to the NICU 2!!!!! Dr. Kays told us in our consult back in January that when you make it to the NICU 2 then that is your ticket out the door, so maybe we will be headed out of those doors with our sweet little P sooner than later!!! We continue to thank God for all the healing he has done for Pearson and we will continue to pray for more healing and guidance for Pearson as he gets over the hump of eating! He has been a strong little fighter so far and we know he will continue to fight until he is safe and healthy at home! Here are some great moments I captured over the weekend!


                          One of many late nights in the NICU!

This was yesterday! His 1st smile...we couldn't have asked for a better Easter present!!!

Yay, he's getting food from a bottle!!! And might I say, daddy is a great bottle feeder!

Daddy and His Son

Sorry I haven't posted in a couple of days, but I bring you good news! Pearson is OFF CPAP and on the oxygen nasal cannula's.  It's not the normal oxygen just yet.  It's a machine that is between CPAP and the regular oxygen, however it is just the small clear oxygen tubes, so it's not super uncomfortable for him.  He's doing so good! He's off of all his medicines, and the only thing he is getting through his PIC line is fluids for nutrients, but he will be done with these in a couple of days as well, which means he will not be getting anything except for food! We absolutely CANNOT believe how far he's come in such a short amount of time! We are super ecstatic about how great he is doing, and starting too really look forward to coming home! After we tackle the feeding issue of course though! I haven't tried nursing yet, but hopefully very soon!

Here are some pics I'm sure you all have been waiting for! Pearson and his daddy! Yesterday Matt was able to hold Pearson for the first time, since he was finally able to come off the CPAP!  It was the most special and sweetest thing seeing Matt hold Pearson for the first time! I can't tell you how much this meant to Matt to finally get to hold his beautiful (look alike) son! A dream come true might I say, and a moment we have been waiting for for sooo long! We truly feel like the most blessed parents in the world to have this amazing miracle for a child! GOD is so wonderful!!!! We thank Him everyday!!!

The tape you see on his cheek is holding his feeding tube in place, which goes down his nose.

5 Weeks Old!!!

Once again, I can't believe another week has gone by, and my what progress Pearson has made in the last week! He is still on CPAP but should come off tomorrow HOPEFULLY! You never know what Dr. Kays might do though! I'm sure all of you CDH moms who have used him know exactly what I'm talking about! Dr. Kays doesn't just go by the doctor rules, he can tell just by looking at the baby or even by the feeling he has as to what needs to happen. I think this is what makes him so amazing and special at what he does for these babies! Pearson is now getting 7ml of milk through the tube, but it is still bypassing his stomach so we still do not know how he's going to handle eating. I am thinking that sometime in the next week I will be able to start trying to nurse him and see how he tolerates it. I can't wait! I am looking forward to actually feeding him and not pumping 24/7!!! God has brought him this far, so I know he will continue to carry him the rest of the way!

Look for pics of Matt holding his beautiful son very soon!!!! We are hoping tomorrow might be his BIG day!!!

Love you all!!!

Pictures!!!

Pearson is still going strong on CPAP. He is handling it much better than he did on Friday! Since he had the episode where his numbers dropped they are keeping him on an extra day or two.  We are hoping and praying he will be off in the next day or two and on to the clear oxygen tubes with the nasal cannulas. I feel for sure he will be a much happier camper once he is on those, and Matt will finally be able to hold him for the first time!!! However, now that he is off the vent we have been able to hear Pearson cry for the first time! It's a very faint cry, but it's there! Music to our ears!!! I never thought I'd be saying that! It will slowly, but surely get stronger and louder. I am attaching some pictures from last Thursday when he got his first bath and some pics of me holding our MIRACLE baby for the first time!!! I still can't get over how amazing it felt to hold him in my arms! Can't wait to share pictures of Matt holding him!!!

                                                  
Pearson after his first bath... I can only imagine how great he felt!

Mommy holding her Miracle Baby for the FIRST time!!!

                                            
                                          


                                             

Happy 1 Month!!!!

I have lots of exciting news!!!! Yesterday I was able to give Pearson his FIRST bath!!! It was so great to have that time with him! He liked it at first, but then I think he started getting cold so he was a little fussy! Today Pearson celebrated his one month birthday by coming off his ventilator!!!! He is doing so great! We couldn't be happier with his progress and can't think of a better way to celebrate his one month birthday. He is now on C-PAP, which he hates! It blows oxygen into his nose and it's uncomfortable so he's done alot of fussing today. I can't say I blame him one bit! One more thing I want to share....I FINALLY got to hold my precious baby!!!!! It was such a wonderful and emotional experience. I couldnt believe I was really getting to hold this amazing gift God gave to us. I will remember this day forever, and I cant wait for Matt to share the same experience. Unfortunately he didn't tolerate it as well as we had hoped so Matt didn't get to hold him. His stats dropped because he got so upset and it took a long time to get him calmed back down. The nurses had already told us that most babies fuss the majority of the time when they are on C-PAP. We decided it wasn't worth prolonging his progress to hold him so we are going to wait until he's more stable and off the C-PAP before we try to hold him again. We are just thankful that God has brought him this far! We owe Him all the praise and glory for allowing us this special day with our beautiful son! I will post pictures soon!

We want you all to know that we continue to feel all the love and support from back home. Everything you are doing to help us get through this whether it's financially, emotionally, or spiritually, we thank you from the bottom of our heart.

Progress, Progress, Progress!!!

It was another great day of progress! I don't think I could ever get tired of saying that! There wasn't really many changes today. They were able to continue weaning Pearson off the ventilator and he will go up to eating 5ml of food per hour tomorrow, which is good considering he started at 1/2ml a week and a half ago. This should show you how slow of a process it is to get them to eat normal...if they ever do, which is our next battle! Once he is off the ventilator and CPAP I will be able to start nursing him. What a wonderful day that will be!!! This is also when we will be able to tell more about if and what problems he will have with eating. A lot of CDH babies have bad reflux which is something we may have to deal with, but please pray with us that we are able to get over the hump of him being able to eat good. If he isn't able to keep his food down then they will put in a feeding tube that he may have to come home with eventually.  The eating process usually takes 4-6 weeks, so we still have a ways to go, but with all of your prayers and our faith in God, I know we will conquer yet another battle! 

4 weeks old!!!

Can you believe it...Pearson is 4 weeks old today! I certainly can't! It makes Matt and I so happy and grateful to look back on these last 4 weeks and think about how far we have come since March 15. Pearson has made and continues to make so much progress everyday! We are so thankful to God for the miracles and the strength he has given to Pearson. He amazes us everyday! Pearson had a very restful day after they were successful at getting his pic line in. They have already tried this once about a week and a half ago, but weren't successful. Since they were able to get the pic line in they took the line out of his neck and will hopefully take the one out of his belly button soon! They were also able to wean him more off of the ventilator, which means we are getting closer to holding our Sweet P! I see a very happy mommy and daddy holding their sweet angel very soon!

An update on Pearson's growth since he was born... He weighed 6.14lb and 20 1/2" when born and now he is 7.5lb (it's hard to get a real accurate weight because of the tubes and the type of bed he's on) and 21 1/2". He's a growing boy!!! Thank you Connie K. for asking me about this. I hadn't even thought to update you all on his growth!:)

Also, there was a baby next to Pearson who lost it's life tonight. Please pray and remember this family. It was very tough for Matt and I to see this, but it just made us that much more thankful for the miracles God has performed with Pearson.

Today was another good day as far as Pearson making progress.  They are continuing to wean him off of his meds as well as his conventional ventilator.  One of the medicines they are slowly taking him off of is his sedation medicine, which means he is becoming more aware of all the tubes, especially the one in his mouth.  This has made him alot more restless and fussy and causes him to gag more as well.  He is also moving around alot more, which causes the mucous in his chest to loosen up, and when it builds up it causes him to feel like he is drowning.  The nurse then has to suction him, which is where they put a tool into the tubes down in his throat and suction out the mucous.  He feels much better once they do this, but it is so pitiful and hard to watch him cry, gag, and squirm when he starts having that drowning feeling.  He had a rough day with this a couple days ago, and then yesterday was better, but today was a little worse again, so he didn't rest a whole lot.  He was pretty unhappy, but luckily his stats stayed good, so they were able to continue with lowering the oxygen level he was receiving from the ventilator.  Eventually, when he is able to come off of the ventilator, he will then be on a c-pap, and then the oxygen tubes that just go in your nose like you see some people have.  Once he gets to the oxygen tubes in his nose and remains stable we will get to finally hold him.  Unfortunately, we aren't sure when that will be still, because it just all depends on how well Pearson does and how fast his lungs develop. Let's continue to pray for those little lungs of his! I know we aren't the only ones who are ready to hold this precious angel! We love you all and thank you for the wonderful and encouraging comments! We look forward to reading them everyday!

Our Little Prayer Warrior

Pearson had another AWESOME day! He has been resting so good and seems so much more peaceful and comfortable.  It feels like a ton of bricks have been lifted off of our shoulders now being able to leave our baby and know that he is going to be resting and sleeping peacefully while we are away. He has started to wean off of some of his medications, so the central line that they have going in his neck, which is a tube that they put in to insert his medicines through, (because he has so many medications that he is on, he actually has 3 different lines run in his body in different places where they feed his medicine into) will hopefully be taken out by Tuesday, which means one more tube GONE!!! He will still have the main line, which goes through his belly button, and one in his hand like an I.V.

I'm sure you are wondering where I got the title, "Our Little Prayer Warrior." Every night before Matt and I leave Pearson for the night, we always say a prayer with him.  Tonight when we were saying our prayer, Pearson had his precious little hands up to his face like he was praying with us.  It was the sweetest thing ever!  I think he knows the man who is getting him through all of this, so he is thanking Him along with his mommy and daddy....what do you think?

What a Beautiful Saturday!

We had a great Saturday with our sweet baby boy! He's doing so good....we couldn't be happier with his progress! He's still doing really good on his new ventilator and resting great now that he doesn't have the oscillator vibrating his whole body while pumping 500 breathes a minute! He is minus one tube now as well! He hasn't been draining anymore fluid off of his chest, so they were able to take his drain tube out of his chest.  You know things are moving in the right direction when tubes start being taken away instead of added.  We are finally learning how that feels.  I can't even describe the feelings and emotions Matt and I have gone through today and many other days, just thinking about how great and how far Pearson has come in almost four weeks.  We stood next to his bed today and just stared at our precious miracle and talked about how we can finally see an end in sight. Not saying that we will be home in the next few weeks, but we know it's going to happen eventually. We feel like the hardest part is over, and for the first time we were able to really talk and be excited about bringing our son home, rocking him in his bedroom, taking him for walks, and all of the other wonderful things we look forward to doing when we get home with him.  Of course we've talked about doing these things before, but it was so much more special and real today, because now we know that that day is coming, sooner than later. God is SO great! We thank Him for every second he gives us with our sweet angel.

Unfortunately, I wasn't in the room when Matt changed Pearson's first diaper, but I was in there for the second one, so I got a picture to share with you all! He's definitely a keeper!:)

What a great day it's been for our sweet little P! He is now on the conventional ventilator and boy does he like it!!! He has had one of his best days yet today! We couldn't be happier with the progress he's made! His left lung appears to be inflating again from where it had partially collapsed. His oxygen gas is continuosly rising, which is great! They were also able to go up on the amount of milk he is getting. He has been resting really good all day long...getting ready for more company to arrive tomorrow! We have been so blessed to continuously have family and friends visiting the three of us! I don't think there has been a single day where we haven't had someone here to see us! It's so wonderful of everyone to take time out of their busy schedule to travel all this way to see this sweet miracle God has blessed us with. We can't wait for EVERYONE to see him when we get home!!!!!

The Comeback Kid!

I hope I didn't worry you all by not posting last night. It was a long day with some ups and downs, so I crashed when we got home. Pearson's stats were up and down yesterday so we had nurses and the doctor in his room alot of the day. They were switching his positions to try and see what made him most comfortable. He also aspirated some of his milk a couple of times, which he gets through a feeding tube, but they are giving him one of his medicines again that they had stopped giving him, so he is doing much better today! He also has a partially collapsed left lung and they aren't sure why, but it should inflate again on it's own. He is resting good today and all of his oxygen levels have been better...thank you Lord! Some exciting news...MATT got to change his first diaper today! Of course it was only a pee diaper! He hasn't been broken in good with a nice big poopy one...YET!!! Lol! Tomorrow they will be putting Pearson on a conventional ventilator, so we are very excited to see how he handles it! The last time they tried him on one he wasn't strong enough, but that was before his repair surgery.  We are much more confident that he will do great this time! Please continue to pray for our little guy! He's fighting a BIG battle...you would all be so proud of his strength! He continues to amaze his mommy and daddy everyday!!!

3 Weeks Old!!!

It's so hard to believe that our bundle of joy is already 3 weeks old! I'm okay with time going by fast right now while we are at the hospital, but as soon as we step out of those hospital doors with our Sweet P, I want everything to SLOW down!!! Pearson continues to move in the right direction and Dr. Kays is pleased with his improvement since coming off of ECMO. We are very thankful to God for this! Some exciting news...Pearson no longer has a catheter, so I was able to change his diaper for the FIRST time tonight! I never thought I would be SO excited about changing a diaper! Lol! It's the small things in life that mean the most!

Another Productive Day!

It was another great day at Shands Hospital in the NICU 3! Pearson is in the clear for being on ECMO again! We can finally be excited about this great news! They were able to remove the tubes out from the side of his neck that they kept in just in case he needed to go back on the ECMO. The more tubes they take away the more of our beautiful son we get to see...one piece of tape and tube at a time! Just like the other day when I saw his cute little ear for the first time....I never thought I would be so excited to see a little ear! Lol! We are praying that everyday gets better and better as it has been here lately. I love being able to share great news with you all!

I couldn't resist sharing this adorable picture we got today of our precious little angel!:) He had to be heavily sedated in order to do the surgery earlier today to take the tubes out of his neck, so this is him waking up tonight from the surgery.

Day 20

Pearson has had a very productive day! He started off this morning with not making much progress, but then Dr. Kays decided to insert a tube into his chest to drain the fluid he had collected. Once the fluid started draining we started to see alot of improvement. We feel very confident that he won't have to go back on ECMO! He is starting to finally wake up for the first time since surgery, last Monday! It was so good to see those beautiful eyes of his again! The swelling is also going down, so he is starting to look like himself! God must have heard ALL of our prayers, because he certainly has answered them!!!

Here's a picture from today when Pearson was wide awake for the first time since surgery! He was giving his daddy one heck of a look while he was taking his picture! Lol!

ECMO Update!

Our precious baby is finally off of ECMO! Pearson came off ECMO around 9:30 this morning, and has remained stable throughout the day.  He has continued to surprise Dr. Kays, so we are hoping he will do it again by not having to go back on ECMO.  He expects that if he does have to go back on it, then it would be in the next couple of days.  So far, so good, though! We did have a small set back today....he developed a bleed in his belly, which is actually why Dr. Kays pulled him off the ECMO a little earlier than he would have, since his stomach wasn't fully working yet.  The ECMO machine thins the blood out, so by pulling him off of it, it allows his blood to clot up so the bleed would stop, which it finally did later today.  Because of the bleeding, he is terribly swollen in his belly area.  It was very hard to see my baby in this condition this morning when I arrived at the hospital.  I wasn't expecting to see him looking completely different than when I left him at almost midnight last night.  Once again, you just never know what these babies with this illness are going to do, and so our roller coaster continues! Please continue to pray for more stable days and that Pearson can stay off of the ECMO machine!!! God continues to answer our prayers!

Tomorrow is the BIG day!!!!

Let me start out by saying Pearson had another GREAT day! We got the news today that our little fighter will be taken off ECMO tomorrow!!! This is a day we have all been waiting and praying for! We are overjoyed about this, but we are trying not to get too excited because we know there is always the chance that his lungs won't be able to handle it and he could have to go back on. I hope to bring you more successful news tomorrow!

Another Great Day!!!

Yes, you guessed it...another GREAT day! Pearson is SO ready for his mommy and daddy to hold him that he is showing improvement by the hour!!! They now have him on the lowest flow of oxygen on the ECMO that the doctor will take him, and now we are waiting for his heart to shift more to where it belongs, since it was moved to the far left side of his chest with the hernia. The doctor also wants to see his stomach start working properly before taking him off the ECMO, because he can't give him the medicine he needs to help keep him from going back on ECMO.  However, it is completely normal for his stomach to be acting the way it is. After all, all of his abdominal organs were relocated and shifted just 3 days ago! The doctor continues to be VERY pleased with how he is responding after surgery and thinks he could possibly be off ECMO in a few days.  I can't tell you what a relief this has been for Matt and I.  Having to leave our little one every night is bad enough, but having to leave him knowing that he isn't doing well.... the feeling is like no other. We are so thankful for these last few wonderful days God has given us and our Little Miracle, and can't wait for many more of them! THANK YOU LORD!

We continue to see new followers and see more comments posted everyday, and we want you to know how much this means to us.  The out pour of love and support literally brings tears to both of our eyes. We are forever GRATEFUL for all of you who are following our blog and praying for our family!