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Nathan's Magical Wish Trip- Pre-trip report

Oh, My. My heart is in my throat thinking about how panic stricken you must have been. . . then what happened? (You poor dears :hug: :hug: )
 
Once again, feel free to skip this if you are not interested. Maybe it isn't appropriate for a pre trip report. But this is a very emotional time for me- because of the time of year it is, and also because we are planning Nathan's wish trip. Also, my religious beliefs are very evident in this post- so be forewarned if that sort of thing offends you.



The next day, we remained in a blissfully naive state. We were in the NICU, with wonderful doctors. He was in good hands, he should be fine, right? We still didn't have a diagnosis and we were kept in the dark about what they thought was wrong. Finally that night, we went in to say goodnight to Nathan. A nurse met us there and said, " Have you talked to the doctor?" We told her no. She said, " They have a diagnosis." When we asked her what it was she said, " I'd rather the doctor talk to you." That never is a good sign. Finally the doctor came in and told us, " Neonatal viral myocarditis". When we asked the prognosis he said, " Well, it isn't as deadly as it used to be." He told us, like any virus, the first 3 days would be the most critical. We called our minister who had headed back to our home town a short time earlier. He immediately headed back to us. We sat next to Nathan's incubator and prayed. Finally, in a daze, we headed back to my parent's house. I went to the computer and googled " neonatal viral myocarditis". In, what I term, another " God thing" absolutely nothing turned up on my search. Months later, when Nathan was on the mend, when I searched again, all sorts of articles with grim statistics popped up. I'm glad I didn't see those at the time.

The next day we felt pretty good-it was Wednesday and he got sick on Monday. First 3 days were the most critical-we were already down 2. The day was fairly uneventful. We had a very cheerful nurse. She suggested I bring some socks for his cold little feet. I was glad to have something "motherly" to do for him. Then Thursday came- David and I scrubbed into the NICU with a little bounce in our step. This was day 3-surely we were on the down hill slide. We were not greeted by our cheerful nurse, Rita. Instead it was Lawanda and she looked at us and said, " You have a very sick little boy here." Did she not understand, this was day 3- he was on the downhill slide! We were almost done with this! And then she took off the socks that Rita had recommended! She said she needed to see the color of his feet. When she left the room ( Nathan had his own little glassed in isolation room), I turned to David and said, " I don't like miss doom and gloom. I wish we had Rita back!"

We sat in his room, reading our books and talking a bit. It was around 10:00am. The way Lawanda hovered around Nathan made us start to get a little nervous- did we not understand the gravity of the situation? Lawanda came in and looked at his feet. Things are a little blurry from here. All of a sudden hoards of doctors, nurses, respiratory therapists were clammored in our room. Alarms were sounding, people were frantic. A ring of nurses stood outside of his room, looking in the glass walls. I could see the look of despair on their faces. They were suctioning and bagging him. I snuck out of the room to the phone. I called a friend from church- she was my go to person to start the prayer chain. Then I slipped back into my chair next to David and watched...and prayed. About 30 minutes later I turned to David and said, " Do you feel it?" He did. We both felt the prayers of our community ( from what I hear, our prayer chain would spread quickly not just through our church but the entire community) and it felt like a blanket of comfort was wrapped around us. Finally, the crisis seemed to subside. Lawanda looked at us and said, " Do you know what just happened?" I told her I thought so. Nathan had crashed-possibly thrown a blood clot. They resuscitated him. Do you know what had tipped her off that there was a problem? The color of his feet! After she left his room, I told David, " Well, Lawanda doesn't make me feel good like Rita does, but I hope she is always Nathan's nurse!" We ended up becoming very close to Lawanda- and remain in contact with her still. She saved his life that day.

Fast forward about 4 years. I am singing a goodnight song to Nathan when he turns to me. He says, " When I was a baby, I went to Heaven for a little bit but then I came back." He paused for a minute and then said, " Did that really happen?" We had never told him how sick he was as a baby. I fully believe that Nathan did go to Heaven that day, and for some reason, God decided to let him come back.

We thought the worst of the day was behind us-but actually, it was just beginning.

But that will have to wait until tomorrow- the actual 10 year anniversary of the day we call " worst day".
 
We sat in his room, reading our books and talking a bit. It was around 10:00am. The way Lawanda hovered around Nathan made us start to get a little nervous- did we not understand the gravity of the situation? Lawanda came in and looked at his feet. Things are a little blurry from here. All of a sudden hoards of doctors, nurses, respiratory therapists were clammored in our room. Alarms were sounding, people were frantic. A ring of nurses stood outside of his room, looking in the glass walls. I could see the look of despair on their faces. They were suctioning and bagging him. I snuck out of the room to the phone. I called a friend from church- she was my go to person to start the prayer chain. Then I slipped back into my chair next to David and watched...and prayed. About 30 minutes later I turned to David and said, " Do you feel it?" He did. We both felt the prayers of our community ( from what I hear, our prayer chain would spread quickly not just through our church but the entire community) and it felt like a blanket of comfort was wrapped around us. Finally, the crisis seemed to subside. Lawanda looked at us and said, " Do you know what just happened?" I told her I thought so. Nathan had crashed-possibly thrown a blood clot. They resuscitated him. Do you know what had tipped her off that there was a problem? The color of his feet! After she left his room, I told David, " Well, Lawanda doesn't make me feel good like Rita does, but I hope she is always Nathan's nurse!" We ended up becoming very close to Lawanda- and remain in contact with her still. She saved his life that day.

Fast forward about 4 years. I am singing a goodnight song to Nathan when he turns to me. He says, " When I was a baby, I went to Heaven for a little bit but then I came back." He paused for a minute and then said, " Did that really happen?" We had never told him how sick he was as a baby. I fully believe that Nathan did go to Heaven that day, and for some reason, God decided to let him come back.


We have a nurse like Lawanda, and a code blue experience as well. Thanks for sharing your faith and your story. I think one of the reason's he allowed him to come back is so that your family can share this story for many more trips to come. I look forward to reading the next chapters as well.
 
:sad1: :hug: What an incredibly scary time this must have been for you. I just can't imagine. :sad2: Your writing is beautiful. I love the affect that prayer had on you all. :hug:
 


Your journey is so moving. Thank you for sharing those dark times with us as well as the wonderful parts.
 
I'm sure this is much more info than anybody wants about Nathan's dark days. Please feel free to skip it if you want. Like I said, it just helps me to "talk" about it. There really aren't many people I can talk to about it. I talk with David- we remember things with such clarity- even the different meals we ate. And I can talk to my parents. They were such a huge source of support. But it is hard to talk to my parents because it still hurts them so much- not only were they worried about their grandson, they had to witness their own baby hurting so deeply. I hesitate to talk to anyone else. I'm sure there are people who would be willing to listen, but I know there are others who think we should be " over it" by now.




After Nathan coded and was brought back, things settled down a bit. We were shaken, but once again felt like the worst was behind us. Our women's group from church asked if they could come up and meet in a little side room by the NICU waiting room. Since we were 90 miles from home, it was good to see them all. It was evening, David was back with Nathan and I was with all my gals-visiting and laughing. A nurse came out- " You need to come on back." Nathan was going into SVT- his heart rate would jump up above 300 beats per minute- they would give him a med to bring it down and almost immediately it would jump back up. I could hear the neonatologist calling all sorts of specialists- desperate for some advice. The look on the doctor's face told me that they came and got me so I could sit by my son for what they thought would be his final hours. Again, I slipped out and went out to my friends. I could barely get out the words, " Pray hard" and I went in to be with my precious baby. The reports I hear is they stayed there praying until early the next morning. In the middle of the night, I couldn't take it any more. They gave me and David a parenting room in the NICU to stay in. We lived here for a couple of weeks. God blessed me with this strange ability to sleep- anywhere and everywhere. My sister, a psychologist, said it was my body's way of dealing with the stress. When it became too much, my body just shut down. I went back to the room and fell to my knees. Many times in my life I have gone to my knees in prayer, and I had heard the term "fall to your knees in prayer" but this is the first time I had actually, truly fallen to my knees in prayer. I cried out to God and started singing a chorus from church- " Nothing is Impossible with God" and almost instantly fell asleep. Whenever my thoughts were too painful to live with, I would sing this song in my head to block out anything else. I woke up about an hour later-went into Nathan's room and asked David, " Is he still alive?" as if he wouldn't have come and gotten me. This went on all night- every 30-60 minutes. Nathan had his own private nurse- Daniel sat in his room watching the monitors with a shot of heart converting medicine in his hand ready to use. He used it over 60 times. Nathan couldn't handle any stimulation at all. So we could not touch him, talk to him, sing to him. His room was almost completely dark with only a little light for the staff to see what they were doing. Nathan even had a cloth over his face to block out any light ( he was on a vent so he could still breathe). I would slip out to make a phone call to update people and my parents would meet me with food. I learned how to sleep straight up in the stiff chair in Nathan's room. I would instantly wake up if anyone walked it and drift off the minute they walked out. The automatic blood pressure cuff would make his alarm go off. David would always lean over and warn me it was about to go off. David would not leave Nathan's side. Finally, after about 24 hours, the nurses told my parents that if David did not eat something, they were going to kick him out.

My poor, precious husband. He was dealing with so much. He felt so guilty that he had not gone with me to the hospital the day we took him back. He thought I was over reacting. Then he told me later that before I got pregnant, he wasn't sure he wanted a 4th child. It isn't really that he didn't want one, he just worried about having enough money and time for 4 kids. He felt somehow that God was punishing him. He begged and pleaded with God, trying to convince Him that he really did want 4 kids. We both know that God doesn't work that way, but at the time, David was blaming himself. David wouldn't leave Nathan's side because he thought he needed to sit there and pray the entire time. Since we couldn't talk, or read in Nathan's dark quiet room, David prayed without end. Irrationally, he thought if he stopped praying, for even a minute, something would happen. My dad promised he would keep up the prayer vigil if David would just slip out and eat the food my mom had waiting for us.

The next day, things didn't seem any better. We could hear Daniel, Nathan's nurse talking to the nurse coming on shift about his harrowing night.
David would rarely leave the room. I would go into the waiting room for prayers groups and to update people. I could hear other mothers talking. Many of them had C-sections and would talk about how their pain meds took the edge off of their emotional pain. My Ob/Gyn came to visit me. I begged him for some drugs. He asked if I could sleep- yes, I could. Then he said, " You might need to make some decisions that you need to have an alert mind for. If something happens and you don't have any decisions to make, then I will help you." The doctor called us into his office. They wanted to transfer Nathan to another hospital so he could be put on heart/lung bypass but they weren't sure he would survive the transfer. But they told us to be ready- they might decide they needed to take the chance. I asked if Nathan could donate his organs, should something happen and he said no because of the virus. Nathan never was transferred. The next several days were all the same- sitting in a dark silent room praying. People would come to visit and ask how he was doing. We would say with great joy, " He's alive!" And even though that was the only positive news we could give, it certainly was great news to us.
 
Oh Carol. :sad: :sad: :sad: Thank you so much for sharing. I know what you mean about people expecting you to be "over it." Sebastian's latest surgery was in August and I already feel like people think we shouldn't dwell. It's hard. Your story made me think about our days with Sebastian in the Pediatric ICU. I think they have to be the saddest places in the world. Like you and David I found that when life brings you to your knees it is the best position to pray. Glory to God that our boys are still here with us. You are an amazing amazing woman. Thanks again for sharing Nathan's story. I'm off to find some kleenex! :hug: :hug:
 


Bless your heart. Thank you SO much for sharing your story. It is very hard for me to relate...I am not even a mom...except to a dog, and that certainly doesn't count. But I have spent several nights with Lauren in the ICU, and it is not a pleasant place to be. And I am not sure how in the world parents handle more than a few days of that stress.

I do know that your church...and the prayers of God's people...were invaluable during that stressful time. How awesome to know that you belong to a Body of Believers that will actually BE there when the going gets really rough. That is a rare thing.

Thank you so much for sharing more of your story.
 
We got mail! Yea! We love mail. First of all, we got 6 pairs of Dream Ears! My husband threw away the box before I got to see who they were from! So whoever sent them, thank you so much.

And then Heather Sue sent super hero shirts for William and Sam! Now you have to understand, William is crazy about Green Lantern and Sam is crazy about Captain America. Okay, maybe they are just plain crazy! William wants a Green Lantern ring for Christmas! They love them! Actually, William's exact words were " Suhhweeet!" He loves that the GL's "saying" is embroidered on the front. Don't worry Heather Sue. They will wear them often. In fact, next week at middle school ( I guess all the schools) is Red Ribbon week for drug awareness and Wednesday is.......SUPER HERO DAY!!!!! Guess who the student council officers are who chose that day. Yep, you guessed it, William and Sam!

I took pictures and will post them as soon as David gets them downloaded to the computer!

Nathan is going to a slumber party tonight. It is at Mitchell's house- the only friend who has EVER invited him over to play ( he has gone to other birthday parties) and certainly the only one who has had him stay the night. Well, I take that back. There have been a few who have invited him over, but I didn't really trust/know the parents so I didn't let him go. I have a couple of friends who have boys who are Nathan's friends who have said they were going to invite him over, but they never do. I know, they are nervous. I do understand that. So we just have a lot of friends over to our house. But Mitchell's parents are great. They are fine that I call at 7:00pm and am to make sure he took his pills. They understand that I am nervous and tell me I can call at any time. It helps that Mitchell has OCD and has his own issues. Nathan and Mitchell are a perfect pair!

Well, I'd better go get some marshmallows to go with the marshmallow shooter we bought Mitchell.

Thanks again to the Big Give Group!

Carol
 
Oh, my goodness, Carol. You guys have been through so much, just a million hugs for your courage! Thank you for sharing what REALLY matters - this stock market thing is only money - life *will* go on - but the kids - Oh my.
 
We got mail! Yea! We love mail. First of all, we got 6 pairs of Dream Ears! My husband threw away the box before I got to see who they were from! So whoever sent them, thank you so much.

And then Heather Sue sent super hero shirts for William and Sam! Now you have to understand, William is crazy about Green Lantern and Sam is crazy about Captain America. Okay, maybe they are just plain crazy! William wants a Green Lantern ring for Christmas! They love them! Actually, William's exact words were " Suhhweeet!" He loves that the GL's "saying" is embroidered on the front. Don't worry Heather Sue. They will wear them often. In fact, next week at middle school ( I guess all the schools) is Red Ribbon week for drug awareness and Wednesday is.......SUPER HERO DAY!!!!! Guess who the student council officers are who chose that day. Yep, you guessed it, William and Sam!

I took pictures and will post them as soon as David gets them downloaded to the computer!

I'm SO glad the boys liked their shirts!!! :cloud9: It really makes my day to hear that!! Thank you so much for letting me know they thought they were Suhhweeet!! :rotfl2:
 
I just read your last installment from the days in the hospital with Nathan. I am bawling. I just can't imagine what you went through. That is something you can never be expected to "get over". :hug:
 
I just read your last installment from the days in the hospital with Nathan. I am bawling. I just can't imagine what you went through. That is something you can never be expected to "get over". :hug:

On the one year anniversary of when Nathan finally got out of the hospital, it was Thanksgiving Day. All of my family was coming over to our house ( I am one of 6 siblings). I told my mom that I wanted to have a little celebration to honor the anniversary. My sister in law said, " So, how long are we going to celebrate this day?" Uh- FOREVER!!!
 
Carol, thank you for sharing Nathan's story with us. :hug: This isn't something that you can "get over". Reading about your husband's prayer vigile by Nathan's bedside was one of the most touching things I have ever read.

When Lydia was a newborn, she was in the NICU for several days, and we were scared that she would die. It's the most frightning helpless feeling. :hug: You shouldn't be expected to "get over it". :hug: Shortly after Sawyer was born, we thought we might lose Heather. You don't get over that, ever. :hug: :hug: Thank you again for sharing this, it is heartbreaking and uplifting at the same time. :hug: I am so happy I've got to know you, your love for your family is so beautiful and powerful. :hug:

And, I thought the Green Lantern and Captain America shirts Heather made were pretty cool too! (Sorry, I am just way to old to say Suhhweet!)
 
Here are pictures of my boys in the incredible shirts that Heather Sue made them.
First is William- aka the Green Lantern

DSCF2820.jpg


Now Samuel-aka Captain America
DSCF2821.jpg


The 2 of them together. If you look carefully, you can see Sam's scar on his left leg.
DSCF2823.jpg


Also, I mentioned before the pumpkin that Nathan and I carved last weekend. I finally got the pictures downloaded.

Nathan and our pumpkin
DSCF2813.jpg


Vampire Mickey
DSCF2817.jpg
 
Thank you everybody who has read and shared with me Nathan's 10 year anniversary. It is nice to have people who understand.

Heather and Teresa- I have read your blogs/websites or whatever you call them about your family history. Very, very touching. I wish I had the computer know how to do something like that.
 
The boys look so heroic in their shirts!! Great job Heather!!
I love your pumpkin!! We carved ours today and dh put a mickey in his too. Not a vampire one just a plain one, anyway good job on the pumpkin!! He's cute!
Your tie dyes on gonna be on their way very very soon!!! I used a different kind of dye than usually and saw that I was gonna run out so I had to get more before I dyed yours. Dh is gonna assist me tomorrow night! So they should be ready to send out on monday!!!!! I hope you guys love them!! :goodvibes
 
Thank you everybody who has read and shared with me Nathan's 10 year anniversary. It is nice to have people who understand.

Heather and Teresa- I have read your blogs/websites or whatever you call them about your family history. Very, very touching. I wish I had the computer know how to do something like that.

Aww, thank you. :hug:

Here are pictures of my boys in the incredible shirts that Heather Sue made them.
First is William- aka the Green Lantern

th_DSCF2820.jpg


Now Samuel-aka Captain America
th_DSCF2821.jpg


The 2 of them together. If you look carefully, you can see Sam's scar on his left leg.
th_DSCF2823.jpg


Those are some SERIOUSLY handsome boys! They look like they really love their shirts!!! Heather is going to be so happy to see these pictures!!!

I can see the scar. Wow, does that go all the way around his ankle?
 
I don't know how to quote more than one person- so I won't quote anyone!

Anyway, Disneymommieof2- I was hoping we would get tie dye shirts! I think they are soo cute!

Teresa, the scar goes about 1/2-3/4 of the way around. He is very proud of it. We joke that we are going to get him a tatoo to complete it around his ankle!
 

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