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Wednesday, January 9, 2013

beauiful blend

I started writing a blog last night, but didn't get it finished. I don't really want to remember yesterday, but I figure I should fill all of you in since so many of you have been praying for our sweet boy non stop.

Quick update...

Surgery went amazingly well. They were successful in everything that they did. When we talked with the surgeon afterwards we were told that Landon's sats were at 100. The highest they have ever gotten was like 95, but they usually hang in the high 80's so we were thrilled with this news. The surgeon told us that he will need monitoring and check ups probably still monthly for this year, but then he will likely only need an echo and checkup about once a year. We were told that he will need another surgery, but he wont need it for another 10 to 15 years, it will not have to be open heart and who knows by that time, it will most likely be a very minor procedure to fix his pulmonary valve.

Clearly we were ecstatic about this news.

We were then told we could go to the PICU waiting room and wait until they got Landon settled into his new room, then they would call us back.

We had just started eating the pizza our parents had ordered for us, when they said we could go see him.

You can never really prepare yourself for that first moment of seeing your baby, glazed eyes, tubes, blood, cords, it is just wrong.

It is just so wrong.




Our playful goofy boy was just staring lifelessly and it was painful for us to see him that way.


You can't really see it, but there's a tear coming out of his eye. The nurse told me that it was just because his eyes were dry, but I knew that it was because he was hurting.


I stood by his bed and wiped every tear as it would start to slide down his cheek. I knew my baby was still in that lifeless body and it was like he was trying to communicate with me when his eyes would twitch certain ways and he would push out his tears.

"Mama I hurt."

I could hear him saying.

My heart was already breaking, but I had no idea what lay ahead for Ryan and I in the next long hours.

Slowly but surely the sedation meds started to wear off. That was when it really started to get painful. Landon started looking around, still with the glazed eyes, but definitely looking around and following voices. Every now and then he would attempt to open his mouth a little, but you could tell that this movement was very painful for him because of the tubes down his throat. He would feel the pain and then he would bring his hands up to his mouth to pull on the breathing tube. We did our best to hold his hands down, but with every time we stopped him, he would just get more frustrated and upset.

As time passed it just got harder and harder for us to see him in so much pain. We all wanted him to be able to get his breathing tube out and we were told that he would most likely be extubated soon.

We thought that getting the tubes out of his throat would help his pain, but it only seemed to get significantly worse after he was extubated. His throat was extremely sore.

He kept getting more and more agitated. He was doing everything he could to get the oxygen out of his nose and scratch his eyes. His eyes were taped shut during the surgery so we don't know if that's why they were so itchy to him or if it was a side effect of the morphine. We were told probably a combination of both.

Landon started getting so upset that he began wrenching his back, kicking his legs and flailing his arms. We could tell that every breath was very painful for him because he would cry and writhe. It started getting to the point where it was so painful for him to breath that he was simply choosing not to. He started holding his breath for longer and longer amounts of time.

I don't think I've ever felt so helpless.

I had to fight my baby boy, grabbing and pinning down his arms, over and over and over again. He would get so upset and all of a sudden his mouth would just stay open, no breaths taken in, no breaths going out. His eyes were so wide, I knew he was scared and in pain, but the absolute worst part was when he would turn his head and open his eyes. Oh his eyes! They were so full of pain. He would look right at me with his frozen eyes and my heart would just stop. I knew he didn't understand why I was hurting him. He was trying to fix his pain in the best way he knew how, by pulling and scratching, but I wouldn't let him. He didn't understand why I wouldn't help him.

 All I could do was lean over, place my mouth against his face, and whisper to him. "I'm sorry.... I'm sorry baby boy.... Mama's so sorry. I know it hurts honey. I know... I know." and then I realized...

I don't know.

I have no idea.

I have never been through any kind of pain like my baby was feeling in that moment. The only instance I could think of where I have actually suffered intense physical pain, was my labor and delivery with Landon.

You can call me crazy, but as I was thinking about that, (tears streaming down my face, still trying to calm my hysterical child) I was so thankful for that pain.

I was so glad that I chose to feel every once of the pain that it took to bring Landon into the world.

It just felt right.

It felt right that I endured pain for my child because in that moment I wished with all of my heart that I could take my baby's pain. I wished that I could free him from the agony and carry it for him.

I didn't think about this yesterday, but as I'm writing that I'm struck by the thought that maybe that is how Jesus felt when He went to the cross. He didn't want to endure the pain, but He chose to because of His immense and unconditional love for us. Because, He wanted to relieve us of the sin that consumes our bodies and souls like a terminal cancer.

All I know is I would of sacrificed anything to relieve Landon of his pain then and there...

 We begged the nurse to give him more pain medication. So eventually she upped his Morphine.

Then another 45 min passed with us holding Landon down and begging him to keep breathing (it's really scary when the nurse even joins in on your begging).

The nurse was clearly beginning to get worried. A child who has just had his chest cut open, his sternum separated, and who has tubes, cords and IV's coming out of him, should not be moving, let alone throwing himself around.

So again she upped his Morphine thinking that all of his writhing is due to the pain he is in.

Another hour went by and nothing had changed.

I was beginning to get light headed. A person can only take so much trauma, especially when it's your child going through it.

Obviously the morphine wasn't doing squat so the nurse ordered in Fentanyl (100 times more potent then Morphine)

So we waited and waited for it to kick in, but it never seemed to.

By this point I was feeling drained and hopeless.

Landon had not stopped screaming and fighting since he got his breathing tube out, which was at 5:30. It was nearing 10:30 and it seemed there was no end in site. He had not slept AT ALL since before he was extubated.

They were discussing with us other meds they could try, when Ryan just hit his breaking point. He told them that they had tried so many pain meds and nothing was helping so it obviously is something more then just pain. He told the nurse that no amount of pain medication is going to stop his hunger. He told her that he is starving and needs to eat, but she told us again what we had already been told, that they don't want him to eat until morning.

When the nurse left the room, I told Ryan I couldn't do it much longer, by "it" I meant watching Landon gasping and writhing in pain... I just couldn't take it anymore. I'd been standing by his bed for hours and I was emotionally dying inside. I knew I was on the verge of just breaking.

So Ryan made me take a break and go sit down in the corner of the room. That's when I went on facebook and begged people to pray for Landon.

When the nurse came back in and saw that Landon was still going strong she asked me if I wanted to hold him. I said yes and that I didn't know that I could or I would have a long time ago. She said that they like to wait 24 hours after surgery, but she thought that maybe that would calm him down enough to get him to sleep.

I thought for sure... YES!! This will work! My baby will relax in my arms and finally give into to rest.

It took three nurses to get Landon lifted out of his bed and into my arms. At first it seemed to be going well, but then he just started squirming, arching his back, pulling, scratching, screaming. I begged him to calm down.

I felt so helpless.

Nothing I did, as a mama, could soothe my baby.

He kept getting worse and worse and worse. I don't know if the move just made him that much more uncomfortable, but he wouldn't stop screaming and then it happened...

We were no longer surprised by his bouts of breathe holding, but that didn't make them any less scary. This time was different though... as soon as I noticed him doing it, I started whispering to him to breathe, he continued to hold his breathe.  Soon Ryan was down by his face talking to him to. Then the nurse started moving his legs and arms in hopes that the movement might get him to take a breathe. By this time, 15 to 20 sec had passed and I was now screaming at Landon to take a breathe. His eyes were closed, his mouth was wide open and he was making somewhat of a choking sound. His color was turning dark reddish blue before our eyes. His alarms were going off because his sats were falling into the 60's. My arm was supporting his head and I was bouncing it trying to startle him into breathing. He opened his eyes half way and I was horrified to see that his eyes were rolling to the back of his head. I was crying and Ryan and I were just screaming his name.

Finally, after what seemed like forever, he GASPED.

I just remember holding him and staring at his face. I have never seen it so lifeless.

After that he was still upset, but he calmed down a little, probably due to the fact that he just had absolutely no strength left.

He stopped fighting, but he was still whimpering in pain.

The nurse returned again with something she told us was an anti anxiety med. She said it would kick in right away and thank God it did.

After the first couple minutes passed of him laying still with his eyes closed, Ryan and I grabbed our bag of subway that had been sitting on the table untouched for 3 hours, and headed to the waiting room down the hall.

 Ounce we got there, Ryan sat down, pulled me onto his lap, and we both just BROKE. It was 11:30 and I'm sure my cries woke up every sleeping body on the floor. I just sobbed and sobbed, releasing all of the emotion that was bleeding out of my heart.

I told Ryan that I felt like Landon thinks we're the enemies. I sobbed at the fact that I'm his mama and I could do absolutely nothing to help my baby. I sobbed thinking of the face that looked up at me numerous times and just begged me to do something to fix his pain. I sobbed because I had to use force to pin my child's arms down when all he wanted to do was relieve his pain, because no one else was doing it for him. I sobbed because I know my child and I know when he's hungry. I sobbed because I couldn't satisfy this most basic need of his. I sobbed because I watched my child choose suffocation over the pain it takes for him to breathe.

After Ryan and I had spent each of our tears and finally ate something, we went back into Landon's room to pull out our chairs and hopefully get some sleep.

It seemed like I had hardly laid my head on the pillow when I was awoken by Landon's screams. I wanted so badly to ignore them. I was so exhausted, but I knew there was no way I could sleep when my baby was hurting like that.

I looked at the clock and it was 1:30AM. Landon's voice was scratchy so the nurse told me she was going to see if she could suction any of it out. I helped another nurse sit Landon up and I watched as Landon's nurse proceeded to push a tube through Landon's nose and all the way down his throat. Every now and then she would push a button that pulled tons of bloody gunk out of Landon's throat. I was startled by the blood and they told me that it's not uncommon after having breathing tubes in because the tubes are large and they can scratch against the esophagus.

After they were done, Landon's breathing was much better. I was kicking myself for not telling them to try that sooner.

Although that helped Landon's breathing, it didn't seem to help his agitation.

Finally at around 2 o clock in the morning, after three nurses and the charge nurse, called the big guns to plead Landon's case for a simple bottle of formula, the request was granted. I'm sure so many of the nurses joined Landon's team because they were getting sick of his screaming waking up their patients, but whatever the reason. I couldn't have been happier making that bottle. Landon grabbed it right out of my hands, which fed my fear that he had lost all trust in his mama :(

He downed 3 ounces in 10 min and was O...U...T before the bottle had even dropped from his hands.



I wanted to share about our horrible, awful, no good day because maybe another heart (or just hurting) mama will read it someday and I can give you hope that even the worst days don't last forever. They will soon turn into yesterday and my hope is that your today will renew your hope just like mine did.

Yesterday I looked into my sons eyes and didn't see the love and adoration that I had grown so accustomed to. I feared that his trauma would scar his love for me. I was sure that I would have to earn back his trust, but then today I was reminded of the goodness and faithfulness of our God. He created children with a resilience that is unbelievable.

I tried to change my memories to words and use them to paint for you a clear picture of our yesterday. I titled the picture "pain" because everything about yesterday seemed to be painful. But today I was reminded that pain can often lead straight into joy and healing.

Today...

The physical therapist showing me that it's okay for Landon to sit up


He wanted to move around and play with his toys :)


Reaching for my hair and melting my heart all over again


He wanted the light on his toe


 "I still love you mama."


 Content and watching Cars


Everyday is a "new" day!

Some days are so much harder then other's, but I am learning that if we embrace each one and grab every ounce of the mercy God is giving us, the good and the bad days can blend together into a life that is beautiful and worth living.

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
They are new every morning;
    great is your faithfulness.
Lamentations 3:22

Thank you again to each of you who prayed for us yesterday. I don't know if there has ever been a day where our family has needed it more. 

We love you! 

 









4 comments:

Steph Heppner said...

So glad yesterday was better for you all. You have all been in our prayers. Hopefully each day will keep getting easier now. Thank you for your transparency and your faithfulness. You are such strong, wonderful person.

Rosie and Cornel said...

Continuing to pray in tears..You and Ryan are truly an inspiration for many ... Blessings for better days ahead. Rosie and Cornel

Lisa said...

Yout faith is so strong it amazes me. You remain in my prayers.

Sandra Decker said...

Natalie I am so proud of how far you, Ryan, Landon and Ivan have come. Keep pressing on and for bringing home your newest 2 children. God has your back!!