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| That's my girl!!!!!!! I'm so proud! |
Saturday, February 19, 2011
Monday, February 14, 2011
Thursday, February 3, 2011
The Day I Became A Heart Mother
The Day I Became a Heart Mother
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!
From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
- Author Unknown
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!
From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
- Author Unknown
Friday, January 28, 2011
Like a herd of cattle...
Lining up to test for Strep throat.
Daddy: Yes
Mommy:Yes (for the first time)
Nicholas: Yes
SD: waiting for culture
Megs:waiting for culture
B: waiting for culture
It's almost funny....almost.
Daddy: YesMommy:Yes (for the first time)
Nicholas: Yes
SD: waiting for culture
Megs:waiting for culture
B: waiting for culture
It's almost funny....almost.
Even his hiccups are cute
Okay so you are probably like "Wow, they even post his hiccups" and while it may not be exciting to you...we love it! When you are told your son "is dying" or he "will be a vegetable his whole life" it makes you appreciate even the smallest things. That's one thing I have learned through our trials with Nicholas. Appreciate even the smallest of things in life. I love that we have learned how to appreciate all things now. I can look at each of my children and see every precious thing and new thing they do and appreciate it. It's a great feeling.
Therefore when Nicholas started hiccuping, I grabbed the camera, Steve grabbed his phone and Stephen D grabbed his ipod...let the taping begin.
See...he is cute, isn't he? Next video...him sneezing! That's even cuter!!!
Monday, January 24, 2011
From Surgery to Applesauce
It's been a while since we have updated anything about Nicholas medically. Honestly, we have been so frustrated we didn't want to talk about it never mind write about it. Well here is goes...I will try and wrap it up all up in a few paragraphs and hopefully common english.
Nicholas has a GJ feeding tube which means there are two ports or openings. One goes directly to his stomach while the other feeds into his intestine. Since he refluxes his food, we feed him into his intestines therefore bypassing his stomach and then no reflux. He recently had his Nissen redone, in hopes of being able to feed him by stomach, only to find out a few months ago that they think it once again has come undone. If his Nissen was intact then we could feed him by stomach and he would not throw up his food. We've tried this and he throws up therefore we know, for now, we need to stick with the J port and feed him through his intestine. Make sense so far??? (probably not!)
Okay, so his feeding tube has been clogging lately. We have had it replaced, which requires a trip to radiology, 4 times since August. It should only be replaced twice a year. NO ONE CAN FIGURE OUT WHAT KEEPS MAKING IT CLOG! So frustrating! We try feeding him, the pumps stops working because it clogs, which equals no food for Nicholas. See why we have to get this figured out! We have an AWESOME GI doctor who has been working hard to figure this out but still no solution. One of his options is a surgical j tube. I'll explain this is a minute.
Our nurse suggested a GI doctor from Chapel Hill so off we went today. He was very nice, listened to us and offered these words. 1. We can try feeding him by his stomach again to see how that works (risking pneumonia!) 2. We can get another gj tube and pray that it works this time. 3. Get a surgical j tube placed. There's those words again...surgical j tube.
SURGICAL j tube. That means surgery for Nicholas. What do you think my response was to that!?!?!? NO WAY! I don't know the exact details of the surgical j tube but the end result would be that he now has two tubes on him. One being a g tube (which feeds into his stomach) and the other would be the j tube which would be surgically put in. The surgery is very invasive and painful to recover from. Did I mention he has another hiatel hernia too? So he said once they're in there he could fix the hernia as well. This would make the surgery even worse. We could have 1. a rough surgery that comes with complications by placing the j tube. Then a year or so later have another rough surgery and fix the hernia or 2. have a even worse surgery by placing the j tube and fixing the hernia with even worse complication all at once.
Our prayer for Nicholas would be that the g tube would work and we could feed him by stomach or that the clogging would resolve for the gj tube. We do not want Nicholas to have surgery again and will do every possible in our power to prevent this. Thankfully we have an awesome medical staff that feels the same way!
Off we went to appointment number two at Brenner to the Kids Eat Program. This is a place of therapists that help kids learn to eat again by mouth. We didn't go in there too enthusiastic after that last appointment. These people are so good and knowledgeable. They get updated on everything and say "OK, let's forget about the hernia for now. That is not an issue at the moment and let's keep rolling with the gj and see whats happens." Love those people. Just the encouragement we need but.....it gets better!
They pull out the spoon and applesauce....
and I am thinking "No thanks, we're not hungry" She starts feeding Nicholas!!!!! Our mouths dropped to the floor!! She fed my baby boy APPLESAUCE!
As you can see by his face he wasn't sure what to make of it. They fed him, listened for his swallow, and then waited for gagging. He did everything perfectly. We were floored. Nicholas ate food, swallowed, and did not gag! They are now going to try and get a specialist to come to the house to work with us and Nicholas to better train him how to eat. Once we get him to two ounces of food we will then go in for a swallow study to see if he can eat more!!!! DO YOU KNOW HOW HUGE THIS IS!!?!?!?!?!?
Nicholas has a GJ feeding tube which means there are two ports or openings. One goes directly to his stomach while the other feeds into his intestine. Since he refluxes his food, we feed him into his intestines therefore bypassing his stomach and then no reflux. He recently had his Nissen redone, in hopes of being able to feed him by stomach, only to find out a few months ago that they think it once again has come undone. If his Nissen was intact then we could feed him by stomach and he would not throw up his food. We've tried this and he throws up therefore we know, for now, we need to stick with the J port and feed him through his intestine. Make sense so far??? (probably not!)
Okay, so his feeding tube has been clogging lately. We have had it replaced, which requires a trip to radiology, 4 times since August. It should only be replaced twice a year. NO ONE CAN FIGURE OUT WHAT KEEPS MAKING IT CLOG! So frustrating! We try feeding him, the pumps stops working because it clogs, which equals no food for Nicholas. See why we have to get this figured out! We have an AWESOME GI doctor who has been working hard to figure this out but still no solution. One of his options is a surgical j tube. I'll explain this is a minute.
Our nurse suggested a GI doctor from Chapel Hill so off we went today. He was very nice, listened to us and offered these words. 1. We can try feeding him by his stomach again to see how that works (risking pneumonia!) 2. We can get another gj tube and pray that it works this time. 3. Get a surgical j tube placed. There's those words again...surgical j tube.
SURGICAL j tube. That means surgery for Nicholas. What do you think my response was to that!?!?!? NO WAY! I don't know the exact details of the surgical j tube but the end result would be that he now has two tubes on him. One being a g tube (which feeds into his stomach) and the other would be the j tube which would be surgically put in. The surgery is very invasive and painful to recover from. Did I mention he has another hiatel hernia too? So he said once they're in there he could fix the hernia as well. This would make the surgery even worse. We could have 1. a rough surgery that comes with complications by placing the j tube. Then a year or so later have another rough surgery and fix the hernia or 2. have a even worse surgery by placing the j tube and fixing the hernia with even worse complication all at once.
Our prayer for Nicholas would be that the g tube would work and we could feed him by stomach or that the clogging would resolve for the gj tube. We do not want Nicholas to have surgery again and will do every possible in our power to prevent this. Thankfully we have an awesome medical staff that feels the same way!
Off we went to appointment number two at Brenner to the Kids Eat Program. This is a place of therapists that help kids learn to eat again by mouth. We didn't go in there too enthusiastic after that last appointment. These people are so good and knowledgeable. They get updated on everything and say "OK, let's forget about the hernia for now. That is not an issue at the moment and let's keep rolling with the gj and see whats happens." Love those people. Just the encouragement we need but.....it gets better!
They pull out the spoon and applesauce....
and I am thinking "No thanks, we're not hungry" She starts feeding Nicholas!!!!! Our mouths dropped to the floor!! She fed my baby boy APPLESAUCE!
As you can see by his face he wasn't sure what to make of it. They fed him, listened for his swallow, and then waited for gagging. He did everything perfectly. We were floored. Nicholas ate food, swallowed, and did not gag! They are now going to try and get a specialist to come to the house to work with us and Nicholas to better train him how to eat. Once we get him to two ounces of food we will then go in for a swallow study to see if he can eat more!!!! DO YOU KNOW HOW HUGE THIS IS!!?!?!?!?!?
Never give up hope...ever. There is always hope through Jesus Christ. He has done so much more in our son than we could have ever even imagined. Praising Him....
James 1:2-18
2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not expect to receive anything from the Lord. 8 Such a person is double-minded and unstable in all they do.
9 Believers in humble circumstances ought to take pride in their high position. 10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business.
12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed. 15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.
16 Don’t be deceived, my dear brothers and sisters. 17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. 18 He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created.
Thank you Lord for our trials through our perfect gift, our son, Nicholas James
9 Believers in humble circumstances ought to take pride in their high position. 10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business.
12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed. 15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.
16 Don’t be deceived, my dear brothers and sisters. 17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. 18 He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created.
Thank you Lord for our trials through our perfect gift, our son, Nicholas James
Thursday, January 13, 2011
Funnel Cake Adventures
I know, I know, what does this have to do with Nicholas? Nothing. We have been wanting to try and make funnel cakes for years and decided today was the day!
Not bad for our first try.....Then again how bad could it be coated with sugar and chocolate!
Not bad for our first try.....Then again how bad could it be coated with sugar and chocolate!
Next adventure....sugar glazed doughnuts. And, yes, I will post pictures.
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