Post op check up 1/28/13

Hey everyone!

What a perfect day for us to drive Nolan to Jackson. Actually, the roads weren't bad until we got to Jackson. We didn't have any trouble and it was Nolan's first snow! He didn't even notice it. His post op check up went great. His chest X-ray and echo looked fine. Brent and I joked about packing up the whole house and taking it with us since our last appointment lasted 22 days! Nolan has had his happiest day yet. He has been a little fussy because he is sore and weaning off of medicines. Today, he has laughed and cooed and played with his feet all day. I think Batson is like home to him. He has spent 45 days of his 6 month life in the hospital not counting the countless appointments! I'm glad he doesn't seem to be scared when we go back. He is just a fearless little trooper. I can't stop thanking God for this miracle. 

Joshua 1:9 

Being a big boy and helping Mrs. Briana do his echo 

Brent took this pretty pic with his iPhone. I ❤️ It 

Happy 6 months Nolan!

Hey everyone! 

Nolan is six months old today! And we are HOME!!! We are so happy to be home with our baby tonight. We were discharged today around lunch. We do not have to be on oxygen anymore, just some medicines. Nolan is such a miracle. We give all the glory to God. We are so thankful for all the prayers and especially thankful for each and every person that had a part in his care at Batson. We were in the best of hands. This is not the last surgery that Nolan will have, but we will continue to pray for his healing and take it one moment at a time! For now, we are going to cherish every moment with him and try to avoid germs. It has already been an exciting evening at home. There was a bird in the house somehow. HUD held the door while Brent chased it around the room with a throw blanket. Pretty entertaining. Nolan slept through it all. Thank you again for all the prayers and support! And happy six month birthday to Nolan!!! 

Joshua 1:9

Nothing like your own bed! 

Update 1/23/14

Hey everyone! 

Nolan is doing great! He likes being on the 5th floor but we are ready to go home! It's looking like we may get to head that way tomorrow if all stays the same! He is completely off all oxygen at this time. Praise The Lord! His oxygen saturations are in the 80s all on his own! I'm so excited about that. They took his feeding tube out and he has been eating well since. Yesterday, he found his feet again! He still loves them. He got his stitches out this morning and his incision looks really good! He has been laughing and even doing some new tricks this morning. I can't describe how good that makes us feel!!! We are so so thankful to have our sweet happy boy back. Please pray that all stays on track today and tonight so we can go home! I can only imagine that doddsville has never looked so good! 

Joshua 1:9 

Playing with his ball this morning! So happy to have a clean face with nothing taped to his cheeks! 

Update 1/21/14

Hey everyone! 

I've been dying to write this post for quite a while! We got the wagon ride today! 

One of his great nurses telling him bye! 

I also got to hold him for the first time in 15 days! 

We are so so happy to be out of the icu. He is resting pretty good this afternoon. Thank you all so much for the prayers. Please continue to pray for Nolan and all the babies here at Batson. We have grown to love and care about the others here and would like to lift them up in prayer as well. 

Rejoice in The Lord always! 

Philippians 4:4

Joshua 1:9

He is pretty relaxed in his room upstairs! 

Great news!

Hey everyone! 

Nolan is off of the ventilator this morning! Praise The Lord!!! We are so so happy. They were able to take him off at about 3 am. He is doing really well with just a little oxygen in his nose. He is starving! Bless his little heart. We are going to give him a little pedialyte and see how he does! If he does well, we can feed him a bottle. I can't wait to hold him today. It has been exactly two weeks since I have held him!!! Too long for me! He still has a ways to go on recovering but this is definitely a HUGE step in the right direction. He is just amazing. Thank you all for the prayers! God is good! 

Joshua 1:9 

Nolan and his daddy this morning 

      He wants that mask off! 

Brent's aunt sent me this. It couldn't be more true! 

Update 1/19/14

Hey everyone! 

Nolan is awake and much more alert this morning! He is following us with his eyes and focusing on our faces. It's such a relief to see! His cardiologist said, "welcome back buddy!"  He is still on pain meds so he is not 100% alert, but much more than yesterday! He had a good night except he vomited a couple of times. He did it again some this morning. We don't believe it's his stomach, but we stopped his feeds for a little bit. It looks like he is just vomiting when he starts to cough and it makes him gag because he has the ventilator tube in his throat. It's understandable! Yesterday he made a HUGE improvement by getting off of his nitric oxide! We were so pumped. Nitric oxide is a gas that helps dilate the vessels in his lungs. It's hard to wean completely off of and he has had trouble with it in the past. He did it like a champ yesterday! No problems there! Today the plan is to wean some more medicines and the vent settings. He can do it! Everyday is a little better. Our family has been in a constant prayer of thanks! My friend Whitney Crow sent me this verse that fits perfectly 

Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus. 

1 Thessalonians 5:16-18

Joshua 1:9

We want to go home and relax in our robes! 

Update 1/18/14

Hey everyone! 

Nolan had another uneventful night! We are so thankful. He has been relaxing all day today. We are working on slowly weaning medicines and vent settings. So far, he is tolerating everything just fine. I don't have much to report! We are just going to be patient for now and let him heal. We are praying everything continues to improve at this rate! 

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God. 

Phillippians 4:6

Joshua 1:9 

I have said all along that I did not want to share pics of him on the ventilator. But, today he looks great and he gave us the "ok" it's priceless 

Update 1/17/14

Hey everyone! 

Nolan had a boring night last night! It was the nicest he has been to his sweet little nurse all week. Today he has been resting really well. He has also been holding my finger!!!! I love it. He has been opening those big blue eyes too. He can't really focus yet because he is on so many medicines right now. He can definitely hear me talking to him. He squeezes my finger and moves his eyebrows. He has been getting milk through his NG tube and tolerating that really well! He is looking a little pale this afternoon but they are going to give him some blood and that should help. His swelling has gone down a good bit! He is starting to look more like himself, which makes it so hard for me to not pick him up and kiss all over him! We still have a long way to go, but Nolan is making his way towards getting off the vent. 

Sorry I have been updating later in the day. Please consider no news as good news! We are spending all of our time at his bedside. 

Thank you to all the people who are fundraising for us. I am just shocked by the support from our community. We appreciate it so much. We definitely plan on paying it forward when we get back on our feet! 

Joshua 1:9 

Nolan holding my hand this afternoon. 

Update 1/16/14

Hey everyone! 

Nolan had a pretty good night last night. He made his sweet nurse work hard. He was fighting the sedation and in some pain. They added a new med that helped him rest better today. They were able to wean some of his ventilator settings. He still gets mad when we mess with him. His lungs have a good bit of junky thick stuff they are having to suction out and he HATES that. He drops his sats when they do it but he comes right back up. He has a long way to go but he has already come a REALLY long way so I know he can do it! His cardiologist told Brent that he gets a gold star for today! I'm praying he gets many many more. Thank you for praying! Please pray that he has a great relaxing night tonight. 

Joshua 1:9

Throwback Thursday Newborn         Nolan

           Nolan 10 weeks old

Update 1/15/14

Hey everyone! 

Sorry for not posting earlier today! Nolan has a closed chest! He did really well and has continued to tolerate it being closed. They finished up right before lunch today. He is a feisty little thing and it's been hard to keep him sedated today. He really really wants to open his eyes and see us! He can hear me and he starts trying to kick his legs like he is doing a jig. I tried to stay back most of the day because we aren't quite ready for him to be doing all that! We are so excited about his progress. Next big thing will be getting some fluid off of him and then get off of the vent. The PICU nurses have been amazing and have really made him comfortable. All in all, he had another great day. We are so so thankful. I've been sending up prayers of thanks non-stop. I hope tonight stays on trend! Please keep him in your prayers we still have a long way to go. 

Joshua 1:9

Our cousin Swayze Pentecost made this today! It's so perfect! 

Update 1/14/14

Hey everyone!

Nolan has had a really good uneventful day! He is looking more like himself and his color is wonderful. Praise The Lord! In the surgery yesterday they were able to reverse what they did on the last surgery (the Glenn) and place something along the lines of a shunt. We aren't sure why the last surgery didn't suit him. I am just praising God that he is happier and feeling much better with this new arrangement. He is still on the ventilator and will stay on for a few more days or longer if he needs it. They have already gone down on the settings which is great. Tomorrow morning, they will close his chest. They had to leave it open because of swelling. This is not uncommon. It is the coolest best thing I have ever seen. Brent, on the other hand, wasn't a fan ha ha. Please pray that he tolerates his chest being closed. This changes pressures in the chest and sometimes babies don't like it. We need to close it up and move on so we can get off of that vent. They took him off of one of his paralytic meds and he was moving his toes and fingers this afternoon. He even kicked at my mom when she rubbed his foot. He is going to be something else when he really wakes up! We can't wait! Please pray that he continues to recover smoothly. We have such a great sense of peace and happiness. The Lords presence is the only explanation for that. Thank you for praying for us as well. I will update tomorrow on the chest closure. Praying for another boring night in the PICU.

Joshua 1:9

Nolan's first wagon ride out of the PICU (back in September) that's what we are looking forward to! Although, we love his PICU nurses, we would rather have them come visit upstairs. 

Out of surgery

Hey everyone! 

This is going to be a quick update. I'm waiting to get back and see my little fighter. He made it!!!!! He didn't make it easy on them but he is out of the operating room and stable at this time. We give all the glory to God! This is a miracle right before our eyes. God hears our prayers for sure! I am so proud of the medical staff here at Batson. They are fighters themselves. Nolan has a long road ahead of him and recovery will not be quick or easy. We all know he can do it!!! Thank you so so so much for praying! 

I will update more details tomorrow. Tonight, I can only focus on one thing and that's getting in there to get some bald headed baby kisses. 

Joshua 1:9

Big day today

Hey everyone, 

Today is surgery day. Nolan looks good. He behaved really well last night. He is ready. Many people have asked what this surgery is called. This surgery doesn't have a name. This is more like work with what we have and get that baby some blood to his lungs. There are a few options they can do and hopefully the right one will take place. Our understanding is more than likely there will be a shunt involved. We have prayed all night that he will tolerate the surgery and that it will work. 

I met a girl in the hall the other night when I was having a very week moment. She hugged me and gave me so much hope. Her baby,Sadie, is here in the hospital. They were told that Sadie would never wake up that her brain was damaged. She is ten weeks old and became really sick. Sadie woke up! She is out of the ICU and is on the floor with her sweet mommy. She is a living miracle! Her daddy is a preacher and he had done a sermon on Jesus being the key! Jesus is the key to our lives. They kept a key with Sadie through her struggles and prayed really hard for her miracle. Last night, Sadie sent Nolan a key! It has been in his bed since then and we have arranged for the key to go to the operating room with him this morning. We will never forget that Jesus is the key! 

Our friends Lauren and Wesley who have baby John Pearson Clay are here in the PICU. John Pearson and Nolan were neighbors in the Picu after surgery in December. They have been cheering for each other since. John Pearson's mommy sent me a devotion this morning that really is perfect 

 

I believe we will see his power and glory today. Please continue to pray that this surgery takes without complications. Pray for Nolan's strength. Please pray hard for the medical staff that will care for him. And please remember sweet Sadie and John Pearson in your prayers as well. 

Be strong and courageous. Do not be afraid; Do not be discouraged. For The Lord is with you wherever you go. 

Joshua 1:9 

This was the k-love verse today. Perfect! 

His game face is on. Come on buddy you can do this! 

Surgery tomorrow

Hey everyone, 

We are in much better spirits this morning. My makeup made it all the way into the building this morning. Brent told our surgeon, "the nurse is here and she has questions." Nolan had a "boring" night. Just what we wanted. I even got a little extra sleep in myself. He will have surgery tomorrow. We have waited and waited for him to turn this all around on his own. It's just not happening. I had a rough day yesterday and I couldn't stop the tears, mainly because I just knew. Today I feel confident about this decision. Nolan can't stay the way he is right now so we have to fix him. That's just what it is. Surgery is not ideal for anyone and there are many risks. That's why we are going to pray as hard as we possibly can. The surgeon himself told us miracles happen and we may come in tomorrow and decide it's not necessary to operate. So of course we will continue to pray for that. If we do the surgery it will be tomorrow afternoon maybe 1 or 2ish. I will try to update. It will be a busy day. 

I also wanted to tell everyone something that I have learned while being here. God puts every single person in your life there for a reason. There have been people that have been complete angels to us that I thought I may never even see again. People that I worked with years ago and people that brent went to school with and I could go on and on. Also, the first thing Brent and I saw walking into the hospital was a sticker that said be still and know that I am God. Well, actually we saw a girl dressed as Cinderella first. But, anyways we pray for that miracle today and tonight and if that isn't in his plans we will pray for the surgery team and Nolan's strength and recovery. Thank you all again for the prayers. Keep them coming if you can. 

Joshua 1:9 

I'm ready to fix him up and take him home! I love that little face. 

Update 1/11/14

Hey everyone, 

Nolan is ok this morning. His oxygen saturations are a little lower than yesterday. I have been very emotional this morning. I REALLY wanted to see a turn around today and there is still time. We are not giving up. We still have faith that he is going to pull through. We may just have to take another route. We trust that The Lord will guide us and his doctors through this. He is definitely better than he was two days ago and we can be thankful for that. Nolan makes me so proud. He and Brent were baptized together on December 1st. So, at 4 months old he saved his fathers life and at 5 months he is touching thousands of lives. God knows what he is doing. I stood at the doors of the hotel this morning and watched the ms blues marathon runners (I also watched them block our way into the hospital but that's ok!) They just made me remember I need to stop trying to sprint and let Nolan take his time and pace himself. I am continuing to pray for patience and strength for myself and brent and all of our family and friends. Pray for Nolan's lungs to improve. His heart is working well but right now his lungs are sick. And please pray that the medical staff is able to care for him to the best of their abilitys and make the right decisions for him. Thank you so much for the prayers and support. We are absolutely amazed by it. 

Joshua 1:9 

This is still my favorite pic of my sweet baby! 

Update 1/10/14

Hey everyone, 

Nolan is hanging in there this morning. He did not have a good night but that's ok he is making up for it now. He sort of hit rock bottom for a little bit. They were able to resuscitate him quickly. They did have to treat him very aggressively and while doing that they dislodged a plug in his airway. We do believe that was the culprit for his low sats yesterday and his crash last night. Since then he has had the highest saturation yet! God is good! The plan for today is to keep him heavily sedated and on the vent so he can have some rest. He has been through so much and although we want to push him, we don't want to wear him out too much. Brent and I went to the chapel together this morning and when we knelt to pray brent pointed out the verse that the bible was opened to its Isaiah 4:10 

We know god is with us and Nolan. Please pray for an easy day today. Also please say a little prayer for all the family's here in the Picu at batson. 

Joshua 1:9 

Update 1/9/14 pm

Hey everyone, 

Today has been ok. We had some plans for Nolan that he didn't tolerate. He is just not ready. I trust God with all my heart. I also know that Nolan is very tough and babies are miracles. This was my Jesus calling  devotion today. I hope it will get big enough for you to read. 

This is so very spot on for us. I have had to read it several times today. Some moments I am really really scared. But I can't do that. It's not going to help him. Keeping my faith and praying and believing is the only thing in our control. I miss Nolan's eyes and his smile and his little talk. Please pray for our patience and Nolan's healing. Thank you for all the support. It lifts us up. 

Joshua 1:9 

         Nolan on Christmas Eve 

Update 1/9/14

Hey everyone,

Nolan had a boring night! Just what we wanted. He needed the rest. This morning he was doing really good and when I say "good" I mean his levels were in an acceptable range for right now. We would like to see better, but we will take any improvement graciously. At the moment, his oxygenation has dropped a little bit, but we believe he is just irritated from being messed with this morning. I believe it will rise again shortly. When he settles down, I'm hoping we can start turning down the ventilator. He is heavily sedated while on that vent and I'm really missing those blue eyes. If everyone can just pray that he will be ready for that soon! Thank you for all of the prayers and support. So many people have reached out to us and it is more comforting than I can put into words. Please keep praying! I know Nolan is going to get over this and recover back to his cute little self. We will be praying and waiting. 

Joshua 1:9 

This was Nolan after they started his IV the other day! He rarely lets me baby him like that. He is very independent! But for that moment he wanted me to. It lasted less than a minute ha ha but I loved it 

Prayers are being answered

Hey everyone,

Wow. Emotions today have been very high. We cannot thank you enough for all of the prayers. The power of prayer is amazing. We could feel the lords presence all day. It came in the form of small blessings and peaceful feelings. Nolan has made some improvements that we are very satisfied with. He is still critical but stable. He is on the ventilator and resting well right now. We are hoping he has a very boring night with no drastic changes so he can get his strength up. I believe in the power of prayer and I have seen it first hand. Please keep them coming tonight and over the next few days. Thank you for sharing the blog and putting him on prayer lists. God definitely hears us. 

Joshua 1:9

     This is Nolan Monday afternoon. 

Prayers needed

Hey everyone

This morning we are asking for prayers. Nonstop prayers. Nolan finally had his cath late yesterday. They did not find a clot and everything with the heart looked good to them. Praise The Lord! The plan was to leave him on the ventilator over night because his oxygen saturations dropped during the procedure. Over night, they battled low sats and continue to this morning. He is in very critical condition right now and needs to improve over the next 24 hours. I called over to check on him when I woke up at 5:30 this morning. They told me the news and I got ready as fast as I could. Before we could make it up here they called us back and said we needed to come in because he had gotten worse. We lost it. We sprinted to his side. We prayed harder and harder and I knew our lord would give us a glimpse of hope. We are not giving up we will not. Well the good lord has shown his presence. He is sating in the 70's at this time which is a major improvement from earlier. Please join us in non stop prayer. Pray for healing and improvement. I trust that God will provide this for us. Nolan's surgeons and cardiologists are hopeful as well. They believe it may just be a rough day but things are already looking up. Please pray that's all we know to do. I don't know what else to say. My mind is not very clear right now. Nolan is strong and courageous and never ceases to amaze us. Thank you all so much. I'll try to update soon 

Love, 

Ashley

Joshua 1:9 

   Sweet boy drinking his juice yesterday. 

This was Monday night! He was just a talking! 

Cath tomorrow!

Hey everyone, 

Sorry I haven't updated. We just really didn't know what the plan was and nothing has happened. We have been hanging out in the hospital room all weekend. Nolan is alright with that. He is getting LOTS of attention and loved on constantly. He gets the shots twice a day and he gets over them really fast. Much better than my adult patients act about lovenox shots! We did not do an echo today. The cardiologists and surgeons all agree that doing a heart cath will give us the most information about what Is going on. That way, they can decide what to do to get this baby fixed up. Please pray for them to find the problem and solution. Nolan has to be put to sleep for the procedure so please pray that he handles that well and gets off the ventilator quickly. Also, he can't eat after midnight again. Pray he sleeps through that again. This time he can have water or apple juice until 7 am. He has never had either. Pray he likes it and will take it. He is the second case tomorrow so they are predicting it may be around 10 or 11 in the morning. Thank you for all the prayers. 

Joshua 1:9

           Played himself to sleep

        Teething on top of everything else! 

  Reading to pops ( or whatever Nolan decides to call him!)

I used to joke and say I have kissed him a million times. Now it's more like a billion. And I'm not kidding. Can't stop! 

Change of plans

Hey everyone, 

There has been a change of plans today. It's really complicated to explain. Nolan is still doing fine. We did not do the MRI today. More cardiologists and the surgeons got involved and decided that may not be the best route for him. We know they want the best for Nolan and that's why they are spending more time evaluating him. We have complete faith in them. It has not been easy on us though. Nolan is used to eating every two to three hours. He went almost thirteen. Not a happy baby. But I will say, prayers were answered because he slept ten of those hours in my arms. In the crib ha ha I'm getting used to it. I didn't sleep a wink last night trying to keep him comfortable and not wake him. I'm so good I gave his 3 am medicine and took his blood pressure for the nurse without waking him ha ha. I was serious about it. I know how unhappy he can get when he is hungry. It's hard on parents to deny their child food when we know, that he knows, that we know what he wants. Excuse my grammar on that one (easier said than written) So, The Lord helped us get through it like we knew he would. Better than I imagined! Now the plan is to give the lovenox (blood thinner shots) twice a day through the weekend. They will determine what to do about it early next week. It still may or may not be a blood clot. I'm not sure what we need to pray for except easy days in the hospital and the best outcome. Whatever God and his medical staff see fit for Nolan. And pray for us parents and grandparents. We have a hard time every time things change on us. 

Joshua 1:9 

This is how we slept last night! Or shall I say didn't sleep ha ha and long legged brent on the pull out chair. 

Specific prayer requests!

Hey everyone, 

I've never blogged this close together! I just really believe in the power of prayer and we need all we can get tonight and in the morning. Nolan is doing fine. Playing and watching the sugar bowl. The cardiologist came in to speak with us and he said after looking at the echo they have suspicion that it may not be a blood clot! They think it could possibly be a suture from the surgery, in that case we would not have to do anything. It's extremely hard to tell everything on echo. So he will have a MRI done in the morning. The MRI will take 30-45 minutes. With that being said, there is no way a 5 month old can be still enough. They will have to put him to sleep. Always scary to me but at least we know he is not allergic to any anethesia so far! He can't eat after midnight and you know how hard that is on a baby that is used to eating all night whenever he wants. If it is a blood clot we will continue with the plans to give him lovenox shots twice a day until his next surgery. I do not want to do that! There are risks to being on blood thinners for so long that we would like to avoid. Please pray tonight that it is just a suture and pray that he has a good night without eating! My devotion today started with "relax in my healing presence" that's what we are going to try to do tonight. Thank you for praying

Joshua 1:9

We want to go back home and jump! 

Hospital admission

Hey everyone, 

Nolan has been doing great since his surgery 3 weeks ago. He no longer seems to be in pain at all. Praise god for that. There is nothing worse in the world than to see your baby hurt. He loves his feet these days and blowing bubbles! His post op check up went well. We had a wonderful Christmas after that. Santa was really good to hud and Nolan. We went to the pediatrician Monday and she was very pleased with Nolan as well. We had our first follow up with the cardiologist this morning. On the echo she found that some blood was pooling in his ivc. Long story short he has what they think may be a small blood clot in his ivc (this is the major vessel in his heart that was moved during his last surgery.) This is not very uncommon after the procedure that he had. We are in the hospital at batson until at least Saturday to start him on lovenox shots ( a blood thinner). he is in great spirits just hanging out and watching sports center (his favorite show). Please pray that he gets his IV started with one stick. It's always hard on all of us to stick him. They will be here any moment to do that. And please pray that the clot resolves soon. He is so tough and we have faith this will all be fine. Thank you in advance🙏🙏🙏

Joshua 1:9 

       Wagon ride yesterday! 

       Playing with his feet

          Watching sports center