It's 4am, and I've been crying for hours. I can't even fully explain why. I just can't seem to stop.
Mikah is asleep right beside me, and I've been watching him literally all night. I take comfort in the fact that despite whatever disorder Mikah may have, he has always seen stable. He has always eaten like a little pro, and never shown any signs of being anything but healthy.
But I'm crying because Khoen was healthy, too, and it's so unfair that he isn't here. I try so hard to be strong, and 90% of the time I feel like I do a pretty good job. But sometimes it just hurts too much, and it's just so hard.
Even in my weakest moments, I don't doubt God, and I don't doubt his plan for my life, or Khoen's life, or for anything. I know that He is good.
But looking at Mikah right now, I can see how much he is growing. How big and strong he is getting. he rolls everywhere now when he is playing, and he is trying so hard to sit up on his own. He is starting to show signs of cutting his first tooth, and he is just such a happy, fun little guy to be around.
I enjoy every second with this little boy, but they also hurt so much. I want Khoen so badly.
I just want to see him, and see how big he would be, and what he would be doing. I wonder how big he would be, and how the two of them would interact together.
Please excuse my ty-pos, I honestly can't see well, because I really can't seem to get my tears under control.
Like I said, though, Mikah has always been stable, and never had any major health issues. And that is really reassuring as we wait to see his new genetic specialist, and get answers about what is going on inside his little body. And had this happened before Khoen passed away, when I had both of my boys; had they told me before all of this that my boys were at a serious increased risk for SIDS, I still wouldn't have worried quite as much. I would have never thought that could happen to me; to my family; to my children.
But Khoen did pass away, and it terrifies me now. They told me to "be on the side of extreme caution" and take Mikah in if he showed any signs of not eating quite as well, being overly tired, or being ill at all.
So my brain is screaming, "Holy crap, Mikah just coughed...is he ok?!?"
I don't even know what the line is right now for being over-protective and overly paranoid, and being on "the safe side."
And tonight, I'm just so tired and so stressed and so scared, that it just feels like too much. I need my kids, they are my everything. And I've already had to face the fact that Khoen was meant for better things, no matter how much it hurts. I can't bear to think of facing it again.
All of this is just so unfair. I read the blog tonight of a mom who lost her little boy to cancer...probably not the best thing to read when I'm already way too emotional about my own son, but still, I felt I had to read it.
Cancer. Diseases. SIDS. Still-births. Miscarriages.
It's all just so unfair.
And I'm so broken hearted tonight for some amazing friends of mine and Dustin's. September 20th will be their daughters first birthday, and her first angelversary in Heaven. And I hate this so much for them, because I hate that they have to hurt. I just wish I could take all of their pain and tears and carry them through this month.
I've come to the conclusion that the statement, "God doesn't give you more than you can handle" is not quite an accurate statement. It almost is, but not exactly.
Truthfully, it should say, "God doesn't give you more than HE can carry you through." Because let me tell you one thing that I know for sure...this has not been me, Meredith, walking in these shoes for the past 3 months. It has been God, carrying me every single day, being my strength in every sense of the word.
I'm not as strong as some may think that I am, and the truth is that that's ok. God says I don't have to be, because He is strong for me. I couldn't possibly be more thankful for that.
And tonight, I need His strength. I am trying to just turn this all over to Him, as he knows my pain, and knows that I will be ok.
Sometimes it's harder than others. I am a mother. I am Mikah's mother. I just want to shelter him and protect him, and make sure nothing bad ever happens to my baby boy.
I am Makenna's mother, and I want to make sure no stupid bugs bite my babygirl and make her little leg hurt. I want to make sure she doesn't get teased at her school, and protect her from the world.
I am Kaisyn's mother, and I want to keep my clumsy little sweetheart from falling over as she waddles around the house. I want to make sure she doesn't get a boo-boo, and that she feels safe no matter where she is; because she knows mommy loves her, and is here.
But I am also Khoen's mother, and I want to hold him, and kiss him, and sing to him, and snuggle him, and wipe his tears, and take him to the doctors, and protect his little heart, and keep him safe, and dress him in cute clothes, and laugh with him, and teach him things, and do every little thing that we as mother's sometimes take for granted. But I can't, because he is now my little angel, and he knows a happiness that I can only fathom.
Every day with your children is a blessing, and it shouldn't take something life-altering to show you that. No matter how much they push your buttons and work your nerves, be thankful for every moment that you have your children in your arms, because we are never gauranteed tomorrow.
To all the mommies who have little ones who are fighting for their lives every day, please know that I'm praying for you, even if I don't know you personally. You're children are my heros.
And to all of my fellow angel mommies, I am sorry you know this pain. I am sorry that you know how these "empty arms" feel, and I am praying for you as well.
You never know how strong you are until being strong is the only choice that you have. <3
Knowing how many people love my little Mikah and Khoen, and Makenna and Kaisyn as well, melts my heart. Hearing all of the prayers that are coming our way is such a blessing in itself. And I've thanked God so many times for the amazing people he has shown to me that I don't even know; but that would take the time out of their day to tell me that they are praying for my family, and that they admire us. You are amazing, and I feel like God lays the words on peoples hearts when he knows we need to hear them the most.
Its ok to not always feel like you're made of steel; God can be strong for you. Just remember to turn it over to him.
Tonight, I'm pretty sure I'm made of playdoh, and I don't know how many more tears I can possibly shed before my eyes are completely dried out. But tomorrow is a new day, and only God knows what it will bring.
Goodnight, Khoen. Please stay extra close to your brother right now, and to mommy, daddy, and your sisters as well. I know you hear Makenna tell you goodnight every night, and good morning every day when she wakes up. She misses you; daddy misses you; Kais & Mikah miss you; and mommy misses you, little man, so so much.
I don't feel strong right now, but I have no choice but to press on. So that is what I will do. <3
Sunday, September 9, 2012
Friday, September 7, 2012
Blessings in Disguise
This morning started like every other day has this week. I got Makenna up at 7:15, and started getting her ready for school.
When she first got out of bed, she told me her leg hurt. I just kind of swept it under the rug for the moment, thinking it was just from sleeping on it funny, and told her it would feel better once she had been up for a little bit.
We brushed her teeth, and Miss Independent dressed herself, and we came downstairs to fix her hair. That's when she told me again that her leg hurt. So I told her to come sit down and let me look at it.
HHHOOOOLLLLYYYYYY cow.
She had a knot on the top of her right calf the size of my fist, and her little leg was all swollen around it. It was red, and got darker closer to the top of the knot. Then, at the very top, it was lighter, kind of white, and had yucky stuff coming out. Disgusting, I know. But seriously, ouch.
I felt terrible for brushing it off the first time she said it, but she had seemed otherwise completely fine. And honestly, my head is still spinning from the convo with the neurologist about Mikah last night, and I didn't sleep too well.
Anyways, I knew then that there was no way I was sending her to school with that nasty thing on her leg, and called the doctor. They wanted to see her, and made her an appointment for 11.
I gave her some benedryl, and the nurse had told me to give her some children's ibuprofen to help with the pain, so I did that as well.
Dr. Lye said that the knot was a bug bite, which was what I suspected, and that she had an allergic reaction to it. And it had swollen up so much during the night that the skin had burst, and infection had possibly gotten into it. So he wrote her a prescription for an antibiotic, and drew a circle around the bite on her leg.
If the redness continues to spread outside of the circle (which is hasn't so far, thank God), then I have to start her on the antibiotic, because that will mean there is infection. And if she starts to get red streaks up her leg, I have to call back so he can re-evaluate and decide if she should take the antibiotic, or be seen again to make sure there isn't a stronger infection present.
All in all, not such bad news, and I'm glad that I had given her benedryl. It has seemed to help a lot, and she is no longer telling me that it hurts constantly. So we are hopefully on the road to recovery from that one!
But, it was in a way a blessing that she had to be seen today, because I also got to talk to Dr. Lye (Mikah's doctor as well) about what Dr. Jacobson had said.
Dr. Lye said that he called the genetic specialist this morning, and she is supposed to call him back by the end of the day to talk to her about the enzymes that were off in Mikah's bloodwork. Once he talks to her, he will know more, but he can't read as far into the genetic aspect of things as she can.
He did say that occasionally, certain enzymes can show up on tests that they are off and, when tested again, it can all be a false alarm. But there are others that if they are off, it isn't good news, and that's why he wants to talk to the specialist to see what was off for Mikah.
So, for the moment I was kind of thinking well hey, maybe this is all just a false alarm. But then, Dr. Jacobson called me, while I was still talking to Dr. Lye.
He was calling to make sure that the specialist's office had called me to set up Mikah's appointment (which they did, and he goes in on Monday at 10am!), and I told him they had. He said he was glad, because he wanted up in early next week.
He also said that for the weekend, we need to be on standby with Mikah, which was the scary part. There are some days that Mikah doesn't eat very well, and will only eat an ounce or two at all of his bottles. We had already talked to Dr. Lye about this before all this genetic metabolic stuff happened, and we all just kind of attributed it to hes-a-growing-baby.
But, for now, until we get things figured out with the specialist, Dr. Jacobson said he doesn't need to go more than 4 hours without eating. This means that if he goes more than a couple bottles in a row only eating 1 or 2 ounces, he goes straight to the CMC emergency room. If he spits up big after multiple bottles, or multiple times after one bottle, he goes straight to the ER. If he seems lethargic at all for any length of time, he goes straight to the ER.
This is scary to me, because I guess it makes things seem more real, and potentially more serious. Bear in mind, though, that as of now, Mikah hasn't seemed to have any problems with his protein levels being off. He DOES have the mis-shapen head that the disorder causes, and his head is growing too quickly, which is also caused by it. But he has tolerated what he has been eating well, so I'm praying the he is a good little eater this weekend, and we get answers on Monday.
This also means though that he can no longer sleep through the night. Anything longer than 4 hours for Mikah is considered fasting, and could be dangerous for him if he needs certain proteins for his little body to get through this. So we want to keep him stable, and not take any chances.
Dr. Lye also said no more baby food until we figure it all out, just to be on the safe side.
Also wanted to share that Dr. Lye was pretty amazed that they got us in with this doctor on Monday...he said that it usually takes a minimum of 10 months to get an appointment with her of any kind. So way to go Dr. Jacobson!
Although in a way, that little fraidy-cat inside me keeps saying "Whyyyyy did they get you in so quickly? Is this that serious of a matter? Are his enzymes and proteins that far off, to where it could be that dangerous?"
I have to keep telling myself THIS IS IN GOD'S HANDS, not ours, and really, not in the doctors either. Yes, they will care for Mikah and help regulate everything so that he has the best chance possible of coming out of this onto the other side like a pro. But, the doctors are in God's hands too. And so far, God has truly blessed us with an amazing team of doctors!
Dr. Lye said that he will call me this evening after he speaks to the specialist, and let me know what she says. And hopefully then we will have a little more insight into the whole thing.
It makes me wonder though....
If "fasting", or going more than 4 hours without food, is that dangerous to Mikah, then it could have been to Khoen, too. Dr. Jacobson said he would have shared this disorder as well, being his twin.
And in May, Mikah and Khoen started trying to sleep through the night. They weren't always going all night, and Khoen especially would wake up at 2am wanting his bottle on most nights. But, he did sleep all night at times. And in May is when he had his spell of being hospitalized for lethargia. Neurological crisis. Due to fasting, or sleeping through the night?
And he was getting even better at sleeping all night at the end of May, first day of June. And on June 2, he didn't wake up. He shut down during his sleep. Neurological crisis. Again, due to sleeping through the night?
Because had I ever had the slightest inclination that it could be dangerous for him, I would have continued to wake him (and will continue to wake Mikah) until this was regulated, and no longer a concern.
But I didn't know, and I was just doing as I was supposed to do. As the boys slept longer at night without waking up, I let them sleep. And had a bottle waiting for them the minute they awoke.
I didn't know. We didn't know. And now, because of sweet Khoen, we do know, and hopefully we can get this under control before anything has a chance to happen to Mikah.
Just please keep praying for him. Prayer works, and we know that above all else, God really is good. Amazing, even. More than amazing.
Its just so scary to think about how quickly things could happen, and I am trying all I can to not think about that right now. To think that in this moment, Mikah is laying here beside me on his playmat, just playing and being happy little laid back Mikah. And he is ok.
Again, I can't thank everyone enough for the love and support that surrounds us as we make our way through everything. And to everyone who is helping out or has bought tickets for Khoen day, thank you.
God IS amazing, and through him we will be ok!
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.
-Philipians 4:6
If I hear from Dr. Lye tonight, I will update and let everyone know what the specialist says. Fingers crossed for good news!
When she first got out of bed, she told me her leg hurt. I just kind of swept it under the rug for the moment, thinking it was just from sleeping on it funny, and told her it would feel better once she had been up for a little bit.
We brushed her teeth, and Miss Independent dressed herself, and we came downstairs to fix her hair. That's when she told me again that her leg hurt. So I told her to come sit down and let me look at it.
HHHOOOOLLLLYYYYYY cow.
She had a knot on the top of her right calf the size of my fist, and her little leg was all swollen around it. It was red, and got darker closer to the top of the knot. Then, at the very top, it was lighter, kind of white, and had yucky stuff coming out. Disgusting, I know. But seriously, ouch.
I felt terrible for brushing it off the first time she said it, but she had seemed otherwise completely fine. And honestly, my head is still spinning from the convo with the neurologist about Mikah last night, and I didn't sleep too well.
Anyways, I knew then that there was no way I was sending her to school with that nasty thing on her leg, and called the doctor. They wanted to see her, and made her an appointment for 11.
I gave her some benedryl, and the nurse had told me to give her some children's ibuprofen to help with the pain, so I did that as well.
Dr. Lye said that the knot was a bug bite, which was what I suspected, and that she had an allergic reaction to it. And it had swollen up so much during the night that the skin had burst, and infection had possibly gotten into it. So he wrote her a prescription for an antibiotic, and drew a circle around the bite on her leg.
If the redness continues to spread outside of the circle (which is hasn't so far, thank God), then I have to start her on the antibiotic, because that will mean there is infection. And if she starts to get red streaks up her leg, I have to call back so he can re-evaluate and decide if she should take the antibiotic, or be seen again to make sure there isn't a stronger infection present.
All in all, not such bad news, and I'm glad that I had given her benedryl. It has seemed to help a lot, and she is no longer telling me that it hurts constantly. So we are hopefully on the road to recovery from that one!
But, it was in a way a blessing that she had to be seen today, because I also got to talk to Dr. Lye (Mikah's doctor as well) about what Dr. Jacobson had said.
Dr. Lye said that he called the genetic specialist this morning, and she is supposed to call him back by the end of the day to talk to her about the enzymes that were off in Mikah's bloodwork. Once he talks to her, he will know more, but he can't read as far into the genetic aspect of things as she can.
He did say that occasionally, certain enzymes can show up on tests that they are off and, when tested again, it can all be a false alarm. But there are others that if they are off, it isn't good news, and that's why he wants to talk to the specialist to see what was off for Mikah.
So, for the moment I was kind of thinking well hey, maybe this is all just a false alarm. But then, Dr. Jacobson called me, while I was still talking to Dr. Lye.
He was calling to make sure that the specialist's office had called me to set up Mikah's appointment (which they did, and he goes in on Monday at 10am!), and I told him they had. He said he was glad, because he wanted up in early next week.
He also said that for the weekend, we need to be on standby with Mikah, which was the scary part. There are some days that Mikah doesn't eat very well, and will only eat an ounce or two at all of his bottles. We had already talked to Dr. Lye about this before all this genetic metabolic stuff happened, and we all just kind of attributed it to hes-a-growing-baby.
But, for now, until we get things figured out with the specialist, Dr. Jacobson said he doesn't need to go more than 4 hours without eating. This means that if he goes more than a couple bottles in a row only eating 1 or 2 ounces, he goes straight to the CMC emergency room. If he spits up big after multiple bottles, or multiple times after one bottle, he goes straight to the ER. If he seems lethargic at all for any length of time, he goes straight to the ER.
This is scary to me, because I guess it makes things seem more real, and potentially more serious. Bear in mind, though, that as of now, Mikah hasn't seemed to have any problems with his protein levels being off. He DOES have the mis-shapen head that the disorder causes, and his head is growing too quickly, which is also caused by it. But he has tolerated what he has been eating well, so I'm praying the he is a good little eater this weekend, and we get answers on Monday.
This also means though that he can no longer sleep through the night. Anything longer than 4 hours for Mikah is considered fasting, and could be dangerous for him if he needs certain proteins for his little body to get through this. So we want to keep him stable, and not take any chances.
Dr. Lye also said no more baby food until we figure it all out, just to be on the safe side.
Also wanted to share that Dr. Lye was pretty amazed that they got us in with this doctor on Monday...he said that it usually takes a minimum of 10 months to get an appointment with her of any kind. So way to go Dr. Jacobson!
Although in a way, that little fraidy-cat inside me keeps saying "Whyyyyy did they get you in so quickly? Is this that serious of a matter? Are his enzymes and proteins that far off, to where it could be that dangerous?"
I have to keep telling myself THIS IS IN GOD'S HANDS, not ours, and really, not in the doctors either. Yes, they will care for Mikah and help regulate everything so that he has the best chance possible of coming out of this onto the other side like a pro. But, the doctors are in God's hands too. And so far, God has truly blessed us with an amazing team of doctors!
Dr. Lye said that he will call me this evening after he speaks to the specialist, and let me know what she says. And hopefully then we will have a little more insight into the whole thing.
It makes me wonder though....
If "fasting", or going more than 4 hours without food, is that dangerous to Mikah, then it could have been to Khoen, too. Dr. Jacobson said he would have shared this disorder as well, being his twin.
And in May, Mikah and Khoen started trying to sleep through the night. They weren't always going all night, and Khoen especially would wake up at 2am wanting his bottle on most nights. But, he did sleep all night at times. And in May is when he had his spell of being hospitalized for lethargia. Neurological crisis. Due to fasting, or sleeping through the night?
And he was getting even better at sleeping all night at the end of May, first day of June. And on June 2, he didn't wake up. He shut down during his sleep. Neurological crisis. Again, due to sleeping through the night?
Because had I ever had the slightest inclination that it could be dangerous for him, I would have continued to wake him (and will continue to wake Mikah) until this was regulated, and no longer a concern.
But I didn't know, and I was just doing as I was supposed to do. As the boys slept longer at night without waking up, I let them sleep. And had a bottle waiting for them the minute they awoke.
I didn't know. We didn't know. And now, because of sweet Khoen, we do know, and hopefully we can get this under control before anything has a chance to happen to Mikah.
Just please keep praying for him. Prayer works, and we know that above all else, God really is good. Amazing, even. More than amazing.
Its just so scary to think about how quickly things could happen, and I am trying all I can to not think about that right now. To think that in this moment, Mikah is laying here beside me on his playmat, just playing and being happy little laid back Mikah. And he is ok.
Again, I can't thank everyone enough for the love and support that surrounds us as we make our way through everything. And to everyone who is helping out or has bought tickets for Khoen day, thank you.
God IS amazing, and through him we will be ok!
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.
-Philipians 4:6
If I hear from Dr. Lye tonight, I will update and let everyone know what the specialist says. Fingers crossed for good news!
Thursday, September 6, 2012
Mikah's Neurologist Update...
This evening, around 6:15pm, my cell phone rang. I recognized the number as Mikah's neurologist, and answered it hoping for some good news.
For those who aren't aware, Mikah went to the neurologist on August 30 to check on his head growth. His head kept jumping percentiles on the growth chart, so his pediatrician had already sent him for an ultrasound of his brain.
The ultrasound had come back mostly normal, only showing a little bit of extra fluid around his brain. (I'm pretty sure I explained more about all of this on the previous blog. If not, and you want to know more, let me know.)
Anyways, the neurologist had sent him for bloodwork to see if he had a genetic metabolic disorder. This particular disorder can cause SIDS in babies, and if Mikah had it, then Khoen would have had it as well. The neurologist wanted to do it to make sure that what happened to Khoen wasn't a bigger risk for Mikah than normal.
The disorder can cause extra fluid in the skull, defomities (such as mis-shaped heads, which Mikah does have and may need a helmet for later), and, as I said before, SIDS, by causing infants bodies to just shut down.
Well, Dr. Jacobson got the test results back today...and Mikah DOES have this disorder. :(
Dr. Jacobson explained to me that this will affect the way that Mikah's body metabolizes proteins, and can affect him in a couple of different ways.
One, it could cause particular proteins to become toxins in his body, which could harm him.
Two, his body could store up too many of certain proteins, causing his body to go into what he called "neurological crisis."
Three, his body may not get enough of certain proteins, which can also cause this "neuroligical crisis."
There are other ways, too, but he said these are the most likely. "Neurological crisis" is pretty much when the body reacts to either of these scenarios, and just shuts down. It causes sudden extreme lethargia, and can cause babies to just quit breathing.
He also explained that this is most likely what happened with Khoen. He said that there was still no reason at the time to wonder about it in Khoen, because although his head was growing too quickly, he had no type of deformities, and his head was perfectly round.
But, when Khoen was hospitalized in May due to his soft spot swelling, and his not waking up for almost 3 days, Dr. Jacobson said that this was most likely an episode of "neurological crisis" that we caught in time. He said that either a protein in his formula could have stored up inside of him, or turned into a toxin, and it caused him to shut down, causing the lethargy. But, since he was in the hospital on IV's and not eating as much as he was used to, his body was able to get rid of some of this protein, and he went back to his normal little happy self.
And then once he was back at home and eating like normal again, his body began to store the protein again, and that is what caused him to just shut down and stop breathing on June 2. :(
So, Mikah has been referred to a metabolic specialist with Carolina's Medical Center (Levine), and Dr. Jacobson said they should be setting me up with an appointment asap. I should know when it is going to be tomorrow, because they don't want to waste any time.
This metabolic specialist will first want to retest Mikah, to ensure exactly which proteins we need to be monitoring. And once we know, the doctors can set us up on a special diet for Mikah that will stabilize everything, and help to REDUCE the risk of SIDS due to the disorder. This is still scary though, especially after all we have been through from losing Khoen.
So please, please say an extra little prayer for Mikah tonight, and for the next few weeks. I will feel a little better once we have him stabilized on his new diet, but for now I'm a nervous wreck.
All in all, I have to keep reminding myself that above all else, THIS IS IN GOD'S HANDS! And He is carrying me, Mikah, and our family through everything.
Mikah is a strong little guy, and he will get through this. Just please pray. <3
I have been starting Mikah on different types of baby foods, and trying a new one with him each week. But for now, I'm halting the whole process. I am going to stick to just his formula, because Dr. Jacobson did tell us that is can happen suddenly.
If he does get a protein from a baby food that he can't metabolize, he could completely shut down, and I don't want to lose my other son. It's all just so scary, and now, again, all I can do is cry.
I trust the Lord, and I know that He is in control. And as I said, He will carry me through. But, I'm human, and I'm terrified, and my kids mean everything to me. So, I can cry, and it's ok.
Khoen baby, please stay close to your brother. In a way, you saved his life, little buddy. Had it not been for what happened to you, we may never have found out that you both have this disorder, and it could have been devastating for Mikah. I wish we had caught it when you were still alive, but I can't focus on that right now. Mommy did all that I could for you, and it still never feels like enough. I miss you so much, even more now. And I love you so, so much. :'(
Knowing what happened to Khoen, what caused his SIDS, doesn't make everything easier like I thought it would. I thought that if I had an answer, a definite reason for why Khoen passed away, that it would make me feel better than just knowing he had SIDS in general.
But it doesn't. My mind keeps wanting to say the what ifs....
What if Khoen had been sent for a second opinion?
What if Khoen had seen Dr. Jacobson?
What if we had caught this disorder when Khoen was alive?
Could we have saved him?
Would he be in my arms tonight?
:'(
At this moment, all of these thoughts are OVERWHELMING me, and it's really hard. I can say a million times that I know Khoen lived his whole life as God intended, and that God would have called him home that day no matter what. And I do believe it, whole-heartedly, but its hard to make my heart listen to my mind.
Once again, my heart just wants my kids. All four of them.
Makenna Faith.
Kaisyn Hope.
Mikah James.
& my angel, Khoen Lee.
Pray for strength for me tonight, and tomorrow. This is hard, and I'm scared for my other son. I need him. I need Khoen. But most of all, I need the Lord, and He is here, just as Khoen is here.
I'm going to rock Mikah, and feed him his last bottle, and put him into bed. But I don't think I will sleep well tonight. I don't want to take my eyes off him. I just want to keep my hand on his chest the whole night, and make sure he continues to breathe.
Last thing....when I say this disorder can cause him to shut down, that's literally what it means. It means that if he were to stop breathing and his little heart quit beating, just like his twin brothers did, you can't just shock him and put him on a ventilator to save him, you'd have to fix the PROTEIN. And right now we dont know what it is, which is what is so scary.
Just pray, friends. I can't thank you enough.
<3
For those who aren't aware, Mikah went to the neurologist on August 30 to check on his head growth. His head kept jumping percentiles on the growth chart, so his pediatrician had already sent him for an ultrasound of his brain.
The ultrasound had come back mostly normal, only showing a little bit of extra fluid around his brain. (I'm pretty sure I explained more about all of this on the previous blog. If not, and you want to know more, let me know.)
Anyways, the neurologist had sent him for bloodwork to see if he had a genetic metabolic disorder. This particular disorder can cause SIDS in babies, and if Mikah had it, then Khoen would have had it as well. The neurologist wanted to do it to make sure that what happened to Khoen wasn't a bigger risk for Mikah than normal.
The disorder can cause extra fluid in the skull, defomities (such as mis-shaped heads, which Mikah does have and may need a helmet for later), and, as I said before, SIDS, by causing infants bodies to just shut down.
Well, Dr. Jacobson got the test results back today...and Mikah DOES have this disorder. :(
Dr. Jacobson explained to me that this will affect the way that Mikah's body metabolizes proteins, and can affect him in a couple of different ways.
One, it could cause particular proteins to become toxins in his body, which could harm him.
Two, his body could store up too many of certain proteins, causing his body to go into what he called "neurological crisis."
Three, his body may not get enough of certain proteins, which can also cause this "neuroligical crisis."
There are other ways, too, but he said these are the most likely. "Neurological crisis" is pretty much when the body reacts to either of these scenarios, and just shuts down. It causes sudden extreme lethargia, and can cause babies to just quit breathing.
He also explained that this is most likely what happened with Khoen. He said that there was still no reason at the time to wonder about it in Khoen, because although his head was growing too quickly, he had no type of deformities, and his head was perfectly round.
But, when Khoen was hospitalized in May due to his soft spot swelling, and his not waking up for almost 3 days, Dr. Jacobson said that this was most likely an episode of "neurological crisis" that we caught in time. He said that either a protein in his formula could have stored up inside of him, or turned into a toxin, and it caused him to shut down, causing the lethargy. But, since he was in the hospital on IV's and not eating as much as he was used to, his body was able to get rid of some of this protein, and he went back to his normal little happy self.
And then once he was back at home and eating like normal again, his body began to store the protein again, and that is what caused him to just shut down and stop breathing on June 2. :(
So, Mikah has been referred to a metabolic specialist with Carolina's Medical Center (Levine), and Dr. Jacobson said they should be setting me up with an appointment asap. I should know when it is going to be tomorrow, because they don't want to waste any time.
This metabolic specialist will first want to retest Mikah, to ensure exactly which proteins we need to be monitoring. And once we know, the doctors can set us up on a special diet for Mikah that will stabilize everything, and help to REDUCE the risk of SIDS due to the disorder. This is still scary though, especially after all we have been through from losing Khoen.
So please, please say an extra little prayer for Mikah tonight, and for the next few weeks. I will feel a little better once we have him stabilized on his new diet, but for now I'm a nervous wreck.
All in all, I have to keep reminding myself that above all else, THIS IS IN GOD'S HANDS! And He is carrying me, Mikah, and our family through everything.
Mikah is a strong little guy, and he will get through this. Just please pray. <3
I have been starting Mikah on different types of baby foods, and trying a new one with him each week. But for now, I'm halting the whole process. I am going to stick to just his formula, because Dr. Jacobson did tell us that is can happen suddenly.
If he does get a protein from a baby food that he can't metabolize, he could completely shut down, and I don't want to lose my other son. It's all just so scary, and now, again, all I can do is cry.
I trust the Lord, and I know that He is in control. And as I said, He will carry me through. But, I'm human, and I'm terrified, and my kids mean everything to me. So, I can cry, and it's ok.
Khoen baby, please stay close to your brother. In a way, you saved his life, little buddy. Had it not been for what happened to you, we may never have found out that you both have this disorder, and it could have been devastating for Mikah. I wish we had caught it when you were still alive, but I can't focus on that right now. Mommy did all that I could for you, and it still never feels like enough. I miss you so much, even more now. And I love you so, so much. :'(
Knowing what happened to Khoen, what caused his SIDS, doesn't make everything easier like I thought it would. I thought that if I had an answer, a definite reason for why Khoen passed away, that it would make me feel better than just knowing he had SIDS in general.
But it doesn't. My mind keeps wanting to say the what ifs....
What if Khoen had been sent for a second opinion?
What if Khoen had seen Dr. Jacobson?
What if we had caught this disorder when Khoen was alive?
Could we have saved him?
Would he be in my arms tonight?
:'(
At this moment, all of these thoughts are OVERWHELMING me, and it's really hard. I can say a million times that I know Khoen lived his whole life as God intended, and that God would have called him home that day no matter what. And I do believe it, whole-heartedly, but its hard to make my heart listen to my mind.
Once again, my heart just wants my kids. All four of them.
Makenna Faith.
Kaisyn Hope.
Mikah James.
& my angel, Khoen Lee.
Pray for strength for me tonight, and tomorrow. This is hard, and I'm scared for my other son. I need him. I need Khoen. But most of all, I need the Lord, and He is here, just as Khoen is here.
I'm going to rock Mikah, and feed him his last bottle, and put him into bed. But I don't think I will sleep well tonight. I don't want to take my eyes off him. I just want to keep my hand on his chest the whole night, and make sure he continues to breathe.
Last thing....when I say this disorder can cause him to shut down, that's literally what it means. It means that if he were to stop breathing and his little heart quit beating, just like his twin brothers did, you can't just shock him and put him on a ventilator to save him, you'd have to fix the PROTEIN. And right now we dont know what it is, which is what is so scary.
Just pray, friends. I can't thank you enough.
<3
Monday, September 3, 2012
Twas The Night Before Preschool...
Well, I must admit....I'm a nervous wreck. Seriously.
All of you mommies that have little ones in school, I give you props. I'm joining your world tomorrow, and I can't decide if I'm ready or not! Then again, is there ever a mom who is really ready to let their little ones go to school?
I know this is going to be an amazing experience for Makenna, and for that reason, I'm very excited. She is going to have fun, and learn so much, and make new friends. And she really couldn't be more excited.
But I also know that this is the beginning of a 14-year adventure for her....from preschool through 12th grade, this will be her daily routine. And I know how quickly she is going to grow and mature from here, and thats scary!
Makenna is my baby! Ok, yes, I have 4 babies. Just because she is my oldest, and is now 4, doesn't mean this is any easier. For the first year and a half of her life, I worked full time. Then, once I started working at the bank, I was still working part time until she was almost 3 years old. But once Kaisyn was born, I decided to become a stay at home mommy, and Makenna has been my little helper ever since.
When Makenna first learned about what a friend was, she automatically started saying I was her best friend. And I just ate it up....I still do! I guess I just know whats coming in the years that follow this preschool year. Friends, best friends, boys (10 years from now, of course), fun sleepovers, and little heartbreaks. And as excited as I am to be her mommy and walk her through all of it, I wish I could just hold her little self in my arms forever, and just protect her from the world.
Impossible, I know. But wouldn't it be great?
Another scary thing about her starting preschool is that I know Kaisyn and Mikah will be following her through those doors before I know it! And this momma is just not nearly ready to even think about that yet!
But, as I said, Makenna is thrilled. She has her bookbag ready to go, her little clothes laid out, and socks already inside of her shoes. She had her bath tonight, and wanted me to curl her hair so she could be gorgeous for her first day. (Boy, am I going to have my hands full in a few years!) Her hair is too fine to hold a curl, so I told her she could wear a pretty bow, and reminded her that she is always gorgeous, no matter what she is wearing. She was satisfied by this. :)
So she is ready to go, and I am already giving myself the drop-her-off-and-don't-let-her-know-your-sad peptalk. Its been playing in my head for the past few hours. I'm going to do my best to hold myself together for her, and share her excitement.....but I know as soon as I pull out of that parking lot I'm going to lose it! Good thing the school is VERY close to my house!
Having Kaisyn and Mikah with me will help, and my sweet friend Ashley has said she is coming by. I am so thankful for that....I'm going to need a hug! I will make it through the day...and she will be back in my arms before I know it. God's got this...He's knows I know that.
I don't think I would be quite as concerned if she wasn't the only girl in her class. Yes, it's a small class, with only 9 compared to the 18 students in other Gaston County preschools. And there is still one open spot in her classroom....so fingers crossed she gets a little girl to play with! But as of now, it will be Makenna, and 7 little boys.
Don't get me wrong, I love little boys, and Makenna just likes to play with anyone. But at her orientation, she was very excited to see a big bin of Barbies in her classroom....and I'm not sure any of the little boys are going to want to join her in playing with those! And I want her to have that socialization, and someone to share that excitement with. Maybe I can sneak in her backpack and just go play Barbies with her! ;)
Kidding, of course. We are going to pray for the best, and see how things go. And if she doesnt seem to be enjoying it and we think she would do better in more of a mixed environment, with girls and boys to play with, we may pull her out, and put her into a different preschool program. I know that God will show us what the right thing to do is. So for now, I'll be continuing my peptalk, and holding back tears!!
Miss Kaisyn had her first day of "school" this past Thursday, and she did great! She colored a picture, which of course is still hanging on the fridge, and will definitely be going in a scrapbook. Yes, I'm that kind of crazy momma, and my kids "firsts" are invaluable to me. And yes, she has colored many a picture at home, but this was her first picture from school! Big deal.
She cried when we left her, and since Makenna was with me, Makenna lost it. She started crying, and couldn't stand to leave her little sister in there crying. She kept begging me to go back and get her, "save her" as she put it, and it took me taking her to Toys R Us and buying a pony for her to realize that Kaisyn was going to be ok, and we would be picking her up soon. But talk about making it hard for me to leave her there! Geeeesh, your 4 year old being broken-hearted over it does not help!
By the time we came back to get Kaisyn, she was playing like a pro, and she had fun. Of course she instantly started screaming for me once I came into view, but still. She did amazing, and her school is amazing. And I think it is going to be a positive experience for her.
And Mr. Mikah! I swear, this little man literally grows an inch every day! He also went to "school" last Thursday, and did awesome of course. His teachers said he made their day with his sweet little smiles. Mikah is the happiest little boy, and he is so much fun to be around.
Leaving him there was hard...I'm still a little overprotective of him. Ok, maybe I'm a lot overprotective. But walk a mile in my shoes....you'd be the same way.
I think him going to "school" will be a positive experience for both Mikah and momma. Mikah will love playing with his teachers and the other little babies as he continues to become more active, and it will be good for me to realize that I can leave him, and he will be OK.
That's a big deal to me. I still have a fear of leaving him, since when I left for the beach, Khoen coincedentally passed away. So honestly, leaving Mikah for any amount of time scares me more than you can imagine. It's going to take baby steps....and leaving him in loving hands one day a week for 3 hours is a good start, if you ask me!
Going to his neurologist on Wednesday last week was a really beneficial appointment for me. The doctor was AMAZING, and explained things in terms that a regular human could actually understand.
We talked to him about how Mikah's soft spot had been bulging a little lately. His is not nearly as prominent as Khoen's was, but still, talk about scary. And he explained that we all have two sinuses that run from the front of our skull to the back, and they work as a drain for the fluid around our brain as our brains grow and develop. And sometimes, in preemies as well as occasionally in full-term babies, those sinuses are underdeveloped. This simply means that the fluid can't drain as quickly, and can sometimes cause this "bulging" to occur.
THE GOOD NEWS: This really is harmless. The only way that this is dangerous is if it causes hydrocephaly. But, as in Khoen's case, we would have known if that had been an issue for him. His skull would have grown rapidly, and his sutures would have split. And his head would have looked way too big, and it is something that the doctors definitely would have caught, especially since they did an ultrasound.
WHICH MEANS: Our doctor was RIGHT when he said that Khoen's soft spot being full and bulging was not painful to Khoen, and COULD NOT have caused his death. You honestly don't know how amazing that is to hear, because I put so much pressure on myself for not having done more about that with Khoen.
He offered to do an MRI on Mikah to show us that the sinuses on his skull are too small, and so we could feel better about that being all it is. He looked at the head ultrasound from Mikah, and feels VERY sure that this is what caused his bulging. But, that would mean sedating Mikah for a procedure that can prove something which nothing can be done about....even if the sinuses are too small, there is no way for them to fix it. It is something he will just have to grow out of, which is what they told us about Khoen, and what we have been reassured was actually true. I don't want to sedate my baby for anything that isn't absolutely necessary, and we trust the doctor. So we declined.
THE POSSIBLE BAD NEWS: Because Mikah's head is slightly mis-shapen...ok, its pretty badly mis-shaped in the back especially, the doctor wanted to talk to us about a possible genetic metabolic disorder. In most cases, this mis-shapeness of a babies head is because of how he was in the womb, or how he likes to lay on his back. The back of Mikah's head is flat, which is pretty normal, but he also has some bulges and bumps, all which he will most likely grow into and will smooth out as his skull develops.
But this certain genetic metabolic disorder can cause these types of defomaties, and can also cause SIDS. The fact that Mikah was a twin, and Khoen passed away from what they are probably going to call SIDS, is also a factor in why he wanted to test Mikah for this. They did some bloodwork, and we will have the results in a few weeks. If he does have it, he may have to not eat certain proteins, or not go certain lengths of times without other proteins, until he gets a good bit bigger, and the worry of SIDS is gone.
The waiting game is never fun, but either way we are hoping for some relief. If he DOES have it, this will explain why Khoen had SIDS, because Khoen would have had it, too. Not that that makes it any better, but at least we have a reason. And like the doctor reassured us over and over, there was never a reason to test Khoen for this, because he was healthy, and this is rare. So our doctors did nothing wrong. And, if it is positive, we can get it under control, and hopefully have some piece of mind that SIDS won't be as big a worry anymore with Mikah.
And if he doesn't have it, then we still dont have to worry quite as much about SIDS. Khoen did have some issues with his heart and breathing that we thought we had under control, but Mikah has always been healthy and strong. So that's reassuring.
So all in all, we got a lot of reassurance, and good vibes, so-to-speak.
I know this has been long and probably boring, but I felt I should update everyone on my other 3 kids. Most of my blogs are focused solely on Khoen, because they help me express my feelings in ways that I can't do aloud.
I can still feel God working in me, and I know that He is holding me in his hand. And though tomorrow is going to be hard, because the reality of not having Makenna OR Khoen here will be very painful, I know He will get me through.
And I'm sure Khoen will send me a few butterflies to remind me that he is ok, and happy, and watching over mommy all the time. And to let me know he is right here with me. And that little tugging feeling that I get in my heart whenever he crosses my mind, is not a piece of my heart that actually missing....its just my little boy giving my heart a hug. :)
All of you mommies that have little ones in school, I give you props. I'm joining your world tomorrow, and I can't decide if I'm ready or not! Then again, is there ever a mom who is really ready to let their little ones go to school?
I know this is going to be an amazing experience for Makenna, and for that reason, I'm very excited. She is going to have fun, and learn so much, and make new friends. And she really couldn't be more excited.
But I also know that this is the beginning of a 14-year adventure for her....from preschool through 12th grade, this will be her daily routine. And I know how quickly she is going to grow and mature from here, and thats scary!
Makenna is my baby! Ok, yes, I have 4 babies. Just because she is my oldest, and is now 4, doesn't mean this is any easier. For the first year and a half of her life, I worked full time. Then, once I started working at the bank, I was still working part time until she was almost 3 years old. But once Kaisyn was born, I decided to become a stay at home mommy, and Makenna has been my little helper ever since.
When Makenna first learned about what a friend was, she automatically started saying I was her best friend. And I just ate it up....I still do! I guess I just know whats coming in the years that follow this preschool year. Friends, best friends, boys (10 years from now, of course), fun sleepovers, and little heartbreaks. And as excited as I am to be her mommy and walk her through all of it, I wish I could just hold her little self in my arms forever, and just protect her from the world.
Impossible, I know. But wouldn't it be great?
Another scary thing about her starting preschool is that I know Kaisyn and Mikah will be following her through those doors before I know it! And this momma is just not nearly ready to even think about that yet!
But, as I said, Makenna is thrilled. She has her bookbag ready to go, her little clothes laid out, and socks already inside of her shoes. She had her bath tonight, and wanted me to curl her hair so she could be gorgeous for her first day. (Boy, am I going to have my hands full in a few years!) Her hair is too fine to hold a curl, so I told her she could wear a pretty bow, and reminded her that she is always gorgeous, no matter what she is wearing. She was satisfied by this. :)
So she is ready to go, and I am already giving myself the drop-her-off-and-don't-let-her-know-your-sad peptalk. Its been playing in my head for the past few hours. I'm going to do my best to hold myself together for her, and share her excitement.....but I know as soon as I pull out of that parking lot I'm going to lose it! Good thing the school is VERY close to my house!
Having Kaisyn and Mikah with me will help, and my sweet friend Ashley has said she is coming by. I am so thankful for that....I'm going to need a hug! I will make it through the day...and she will be back in my arms before I know it. God's got this...He's knows I know that.
I don't think I would be quite as concerned if she wasn't the only girl in her class. Yes, it's a small class, with only 9 compared to the 18 students in other Gaston County preschools. And there is still one open spot in her classroom....so fingers crossed she gets a little girl to play with! But as of now, it will be Makenna, and 7 little boys.
Don't get me wrong, I love little boys, and Makenna just likes to play with anyone. But at her orientation, she was very excited to see a big bin of Barbies in her classroom....and I'm not sure any of the little boys are going to want to join her in playing with those! And I want her to have that socialization, and someone to share that excitement with. Maybe I can sneak in her backpack and just go play Barbies with her! ;)
Kidding, of course. We are going to pray for the best, and see how things go. And if she doesnt seem to be enjoying it and we think she would do better in more of a mixed environment, with girls and boys to play with, we may pull her out, and put her into a different preschool program. I know that God will show us what the right thing to do is. So for now, I'll be continuing my peptalk, and holding back tears!!
Miss Kaisyn had her first day of "school" this past Thursday, and she did great! She colored a picture, which of course is still hanging on the fridge, and will definitely be going in a scrapbook. Yes, I'm that kind of crazy momma, and my kids "firsts" are invaluable to me. And yes, she has colored many a picture at home, but this was her first picture from school! Big deal.
She cried when we left her, and since Makenna was with me, Makenna lost it. She started crying, and couldn't stand to leave her little sister in there crying. She kept begging me to go back and get her, "save her" as she put it, and it took me taking her to Toys R Us and buying a pony for her to realize that Kaisyn was going to be ok, and we would be picking her up soon. But talk about making it hard for me to leave her there! Geeeesh, your 4 year old being broken-hearted over it does not help!
By the time we came back to get Kaisyn, she was playing like a pro, and she had fun. Of course she instantly started screaming for me once I came into view, but still. She did amazing, and her school is amazing. And I think it is going to be a positive experience for her.
And Mr. Mikah! I swear, this little man literally grows an inch every day! He also went to "school" last Thursday, and did awesome of course. His teachers said he made their day with his sweet little smiles. Mikah is the happiest little boy, and he is so much fun to be around.
Leaving him there was hard...I'm still a little overprotective of him. Ok, maybe I'm a lot overprotective. But walk a mile in my shoes....you'd be the same way.
I think him going to "school" will be a positive experience for both Mikah and momma. Mikah will love playing with his teachers and the other little babies as he continues to become more active, and it will be good for me to realize that I can leave him, and he will be OK.
That's a big deal to me. I still have a fear of leaving him, since when I left for the beach, Khoen coincedentally passed away. So honestly, leaving Mikah for any amount of time scares me more than you can imagine. It's going to take baby steps....and leaving him in loving hands one day a week for 3 hours is a good start, if you ask me!
Going to his neurologist on Wednesday last week was a really beneficial appointment for me. The doctor was AMAZING, and explained things in terms that a regular human could actually understand.
We talked to him about how Mikah's soft spot had been bulging a little lately. His is not nearly as prominent as Khoen's was, but still, talk about scary. And he explained that we all have two sinuses that run from the front of our skull to the back, and they work as a drain for the fluid around our brain as our brains grow and develop. And sometimes, in preemies as well as occasionally in full-term babies, those sinuses are underdeveloped. This simply means that the fluid can't drain as quickly, and can sometimes cause this "bulging" to occur.
THE GOOD NEWS: This really is harmless. The only way that this is dangerous is if it causes hydrocephaly. But, as in Khoen's case, we would have known if that had been an issue for him. His skull would have grown rapidly, and his sutures would have split. And his head would have looked way too big, and it is something that the doctors definitely would have caught, especially since they did an ultrasound.
WHICH MEANS: Our doctor was RIGHT when he said that Khoen's soft spot being full and bulging was not painful to Khoen, and COULD NOT have caused his death. You honestly don't know how amazing that is to hear, because I put so much pressure on myself for not having done more about that with Khoen.
He offered to do an MRI on Mikah to show us that the sinuses on his skull are too small, and so we could feel better about that being all it is. He looked at the head ultrasound from Mikah, and feels VERY sure that this is what caused his bulging. But, that would mean sedating Mikah for a procedure that can prove something which nothing can be done about....even if the sinuses are too small, there is no way for them to fix it. It is something he will just have to grow out of, which is what they told us about Khoen, and what we have been reassured was actually true. I don't want to sedate my baby for anything that isn't absolutely necessary, and we trust the doctor. So we declined.
THE POSSIBLE BAD NEWS: Because Mikah's head is slightly mis-shapen...ok, its pretty badly mis-shaped in the back especially, the doctor wanted to talk to us about a possible genetic metabolic disorder. In most cases, this mis-shapeness of a babies head is because of how he was in the womb, or how he likes to lay on his back. The back of Mikah's head is flat, which is pretty normal, but he also has some bulges and bumps, all which he will most likely grow into and will smooth out as his skull develops.
But this certain genetic metabolic disorder can cause these types of defomaties, and can also cause SIDS. The fact that Mikah was a twin, and Khoen passed away from what they are probably going to call SIDS, is also a factor in why he wanted to test Mikah for this. They did some bloodwork, and we will have the results in a few weeks. If he does have it, he may have to not eat certain proteins, or not go certain lengths of times without other proteins, until he gets a good bit bigger, and the worry of SIDS is gone.
The waiting game is never fun, but either way we are hoping for some relief. If he DOES have it, this will explain why Khoen had SIDS, because Khoen would have had it, too. Not that that makes it any better, but at least we have a reason. And like the doctor reassured us over and over, there was never a reason to test Khoen for this, because he was healthy, and this is rare. So our doctors did nothing wrong. And, if it is positive, we can get it under control, and hopefully have some piece of mind that SIDS won't be as big a worry anymore with Mikah.
And if he doesn't have it, then we still dont have to worry quite as much about SIDS. Khoen did have some issues with his heart and breathing that we thought we had under control, but Mikah has always been healthy and strong. So that's reassuring.
So all in all, we got a lot of reassurance, and good vibes, so-to-speak.
I know this has been long and probably boring, but I felt I should update everyone on my other 3 kids. Most of my blogs are focused solely on Khoen, because they help me express my feelings in ways that I can't do aloud.
I can still feel God working in me, and I know that He is holding me in his hand. And though tomorrow is going to be hard, because the reality of not having Makenna OR Khoen here will be very painful, I know He will get me through.
And I'm sure Khoen will send me a few butterflies to remind me that he is ok, and happy, and watching over mommy all the time. And to let me know he is right here with me. And that little tugging feeling that I get in my heart whenever he crosses my mind, is not a piece of my heart that actually missing....its just my little boy giving my heart a hug. :)
Sunday, September 2, 2012
3 Months Later...
Well, its been 3 months today since I gained an angel. And yet it still feels like a dream.
It's weird though....a lot of times, I still feel like Khoen was a good dream. Of course, his death was a nightmare. But he was such a blessing, and I had him in my arms for such a short time, that it honestly does feel like he was a dream come true some days.
As I've said before, I always wanted twins. I used to play mommy and pretend I had twins, and I wrote stories about me having twins. And seeing two babies on my first ultrasound was my lifelong dream becoming my reality. And it was an incredible, indescribable feeling.
Yet, here I sit, watching Mikah jump in his jumperoo, wondering how I ended up here. What is your plan for me, Lord? What is your reason for calling my son home so soon?
I know I can't understand. But I can feel the hurt, and I miss my son. I miss my twins.
I woke up this morning feeling sad, and at first I didn't realize why. I got out of bed, got my things together for my shower, and just cried. I didn't feel good, and I just felt overwhelmed, yet completely empty. While in the shower, it hit me. It's September 2. It's the 2nd of the month. It's been 3 months today.
Ouch.
I tried to snap myself out of the depressed mood, but just kept struggling. We stayed in, and just enjoyed time together as a family, and Dustin being home with us. And that was nice. Makenna was putting on show after show, as always, and dancing her little heart out. And Kaisyn tried honey mustard with her chicken at lunch, and loved it so much that she had to lick every little drop from her plate she could find. It was hilarious, and she was covered! And Mikah has giggled and rolled and made all of us smile.
It's tricky though. On days like today, it seems like each smile comes with 1,000 tears.
My heart is so full with thoughts of others right now too. Today, sweet little Gabby has been on my mind like crazy. She was admitted to the ICU, and I just can't stand the thought of that precious baby going through anything else. She is so strong, and a definite hero of mine.
And I'm praying hard this month for one of my very close friends, Ashley, and her husband Steven. On September 20, I will be celebrating their sweet daughter Chloes first birthday and angelversary in heaven with them. I know that Khoen is going to be holding her hand, and watching with her as we all celebrate how special she is. I love Chloe, and she has a very special place in my heart. And I just wish I could make this month easier on her mommy and daddy. Please, pray for them. I know God is good, and they know that as well. And He is carrying them through, but I'm still here to hold their hands and walk with them, too.
Khoen has made me a better person, and a better mommy, and a better follower of Christ. And I will never be able to thank my sweet boy enough for that. His picture is my background on my phone, and I look at it first thing every morning, and last thing at night before I go to sleep. Just to remind myself of what I have to live for, and what I have to look forward to when God calls me home. <3
It's weird though....a lot of times, I still feel like Khoen was a good dream. Of course, his death was a nightmare. But he was such a blessing, and I had him in my arms for such a short time, that it honestly does feel like he was a dream come true some days.
As I've said before, I always wanted twins. I used to play mommy and pretend I had twins, and I wrote stories about me having twins. And seeing two babies on my first ultrasound was my lifelong dream becoming my reality. And it was an incredible, indescribable feeling.
Yet, here I sit, watching Mikah jump in his jumperoo, wondering how I ended up here. What is your plan for me, Lord? What is your reason for calling my son home so soon?
I know I can't understand. But I can feel the hurt, and I miss my son. I miss my twins.
I woke up this morning feeling sad, and at first I didn't realize why. I got out of bed, got my things together for my shower, and just cried. I didn't feel good, and I just felt overwhelmed, yet completely empty. While in the shower, it hit me. It's September 2. It's the 2nd of the month. It's been 3 months today.
Ouch.
I tried to snap myself out of the depressed mood, but just kept struggling. We stayed in, and just enjoyed time together as a family, and Dustin being home with us. And that was nice. Makenna was putting on show after show, as always, and dancing her little heart out. And Kaisyn tried honey mustard with her chicken at lunch, and loved it so much that she had to lick every little drop from her plate she could find. It was hilarious, and she was covered! And Mikah has giggled and rolled and made all of us smile.
It's tricky though. On days like today, it seems like each smile comes with 1,000 tears.
My heart is so full with thoughts of others right now too. Today, sweet little Gabby has been on my mind like crazy. She was admitted to the ICU, and I just can't stand the thought of that precious baby going through anything else. She is so strong, and a definite hero of mine.
And I'm praying hard this month for one of my very close friends, Ashley, and her husband Steven. On September 20, I will be celebrating their sweet daughter Chloes first birthday and angelversary in heaven with them. I know that Khoen is going to be holding her hand, and watching with her as we all celebrate how special she is. I love Chloe, and she has a very special place in my heart. And I just wish I could make this month easier on her mommy and daddy. Please, pray for them. I know God is good, and they know that as well. And He is carrying them through, but I'm still here to hold their hands and walk with them, too.
Khoen has made me a better person, and a better mommy, and a better follower of Christ. And I will never be able to thank my sweet boy enough for that. His picture is my background on my phone, and I look at it first thing every morning, and last thing at night before I go to sleep. Just to remind myself of what I have to live for, and what I have to look forward to when God calls me home. <3
Saturday, August 25, 2012
Todays A Hard Day, Khoen...
I feel like I've been able to be pretty strong lately. Dustin has been back at work, and the kids have been kept clean, fed, and happy. And the house is in pretty good shape, and I have spent 80% of the past 2 weeks smiling.
But today is just a hard day.
I don't know what started it, I just know that today feels empty. I'm here, in my house (which is FAR from empty, quiet, or lonely!), with my family. And they are my world. But it just seems to keep overwhelming me today that Khoen is missing.
I haven't had a big breakdown in the past 2 weeks either, until today. Yet I'm crying while I write this, so please excuse the typos. I'm sure there will be a million.
Dustin had a moment the other day. He came home from work, and I was in the kitchen eating dinner with the girls. I had Mikah on my lap, and he said he almost asked me where Khoen was, so he could go get him, and bring him in there.
Sometimes that reality is just so cold. And I swear it really does hit like a ton of bricks.
Today I just keep trying to remember every little detail of Khoen. Every little thing I loved about him, and that made him my sweet little boy. And some of them may sound so crazy, but they are my memories, and to me they are perfect.
I remember how perfectly round his little head was. And he had just the tiniest bit of dark brown hair. Not enough to stick up on his head, buy just enough to make it feel so soft when I rubbed it. Khoen LOVED when I would rub his head, especially during his nighttime bottles. He was so content.
He had blue eyes, but they were dark. I think they would have turned brown....they had a brownish tint to them. He would stare up at me with those sweet eyes, and just watch me as I rocked him.
And his birthmark on his left thigh...I would always rub his leg there. I know it sounds insane, but I loved his birthmark, and it always made me smile. Maybe it was because subconsciously I knew I needed to remember it so clearly. I don't know.
And his cry. So deep down from his throat. He cried like no other baby I've ever heard...it was low pitched, and sometimes so quiet you wouldn't even notice. Such a sweet cry.
I remember his chubby little soft cheeks, and his PERFECT nose. Dustin and I always said Khoen looked too perfect to be ours. (We say that about all our kids. But I make this blog about Khoen, so I'm just focusing on him. No, I don't pick favorites.) And we were right.
Khoen wasn't ours....none of our kids are. They are God's. Khoen was His. He is His. And it still seems so unfair, but I know its not meant for me to understand.
I've been sitting in this rocking chair in my room, Khoen bear on my lap, staring at the crib that my boys were supposed to share until now. We said Mikah and Khoen could share the crib in our room until they were 6 months old, then we would put them in their own cribs in their room. Mikah is 6 months old now. Khoen never got to see that day.
I can't make myself think about decorating Mikahs room. I want to, yes. But I have their names in wooden letters, and I had never gotten a chance to paint them. I still plan to paint both, but I don't know how to decorate his room anymore. It will seem so bare to me with only one crib, even though I know it will be full.
Plus, I want to make a special place in the house for Khoen. A wall, or something, dedicated just to him. We don't have an extra room, so I dont know where to do it. I can't make myself hang Khoens name in the room they were going to share, because it would honestly break my heart every time I opened the door. So I have to make it Mikahs, and just Mikahs....but I'm still trying to figure out how to do that.
Sitting here rubbing Khoen Bears head and little legs helps and hurts at the same time. It's amazing to have him to hold, but I want so badly, more than anything right now, to hold Khoen again. I want to rub Khoens head, and see his birthmark, and hear him cry. I want to hear him make little noises, and try to figure out this world. I want to see him eat cereal, and I want to feed him his bottle. And I want so, so badly to see him smile, and hear him laugh.
God, this is so hard.
Khoen, mommy misses you so much, and I swear it seems like its getting harder sometimes as time passes. I just want to snuggled you again, cuddlebug. I know your happy, and for that I'm happy for you. I just can't wait to see you again. You are such a blessing, Khoen. And it honors that God chose me to be your mommy. Sometimes its just so much harder than you can imagine for mommy not to be selfish, and just want you here, with me, all to myself, forever. And I know that will happen someday. Mommy is just missing you hard today. I love you so much, and I hope you know that. I told you all the time, yet I feel I didn't get to tell you enough.
Sometimes its still hard on me too knowing that I missed Khoens last day. It kills me wondering how many times he smiled, or cried, and wondering if he noticed I wasn't there. I kissed him goodbye that morning, while he was still asleep. So precious and innocent. And so alive.
I hate this pain. And it breaks my heart whenever I hear of another mommy joining my circle. Another little angel going to play with Khoen in Heaven. It's just SO UNFAIR. That, and seeing little ones suffer, and struggle, going through battles with cancer and diseases....it just isn't right. And I get so scared then when I hear of those kids, because I don't want their mommies and daddies to understand this feeling. I don't want them to know it. I just want them to kick those illnesses in the butt and get better.
Our doctor has already warned us that there is a pretty good chance that Khoens death certificate will say SIDS on it. And I will have to live with that. But I can't shake the feeling that I should have done more.
When Khoens soft spot would swell, I always took him to the doctor. Or the hospital. I took him for his head ultrasounds. They said he would grow out of the extra fluid around his brain. That it was harmless.
But Khoen is gone, and he didn't grow out of anything. And I'm just not convinced it was all harmless. Which makes me feel like I failed Khoen as a mommy. I would have given him the world. I would have done anything for him, anything to make him better if he was sick. I'll never know if the fluid on his brain caused pressure, or gave him headaches.
I'll never know if my little boy was really ok, or if more could have been done to save him. He's gone now, and I just wish he weren't.
I've visited his grave multiple times this week, sometimes more than once a day. Makenna wants to ride by every night and make sure his "nightlights" are working. He has 2 of them. And sometimes, she will come to me crying, saying she misses Khoen and wants him to come home. It's so unfair to her, too. She shouldn't know this pain and loss at 4 years old.
But, I still fully trust God. I know He knows what he is doing, and my little Khoen had a greater purpose. I wholeheartedly believe that. Like I said in an earlier post, Khoens name means "Priest", and he is just that. He has shown all of us God in ways we hadn't seen before. And shown us that we won't get through this life without Him.
I will always love my son, and I'll miss him while I'm on earth. This pain may get easier to deal with, but it will never go away. And I dont think I will ever feel complete again. But I know I WILL see Khoen again. And I can't wait, baby boy. You are so special, so precious, so perfect.
I love you, Khoen Lee. Always and forever.
I don't know what started it, I just know that today feels empty. I'm here, in my house (which is FAR from empty, quiet, or lonely!), with my family. And they are my world. But it just seems to keep overwhelming me today that Khoen is missing.
I haven't had a big breakdown in the past 2 weeks either, until today. Yet I'm crying while I write this, so please excuse the typos. I'm sure there will be a million.
Dustin had a moment the other day. He came home from work, and I was in the kitchen eating dinner with the girls. I had Mikah on my lap, and he said he almost asked me where Khoen was, so he could go get him, and bring him in there.
Sometimes that reality is just so cold. And I swear it really does hit like a ton of bricks.
Today I just keep trying to remember every little detail of Khoen. Every little thing I loved about him, and that made him my sweet little boy. And some of them may sound so crazy, but they are my memories, and to me they are perfect.
I remember how perfectly round his little head was. And he had just the tiniest bit of dark brown hair. Not enough to stick up on his head, buy just enough to make it feel so soft when I rubbed it. Khoen LOVED when I would rub his head, especially during his nighttime bottles. He was so content.
He had blue eyes, but they were dark. I think they would have turned brown....they had a brownish tint to them. He would stare up at me with those sweet eyes, and just watch me as I rocked him.
And his birthmark on his left thigh...I would always rub his leg there. I know it sounds insane, but I loved his birthmark, and it always made me smile. Maybe it was because subconsciously I knew I needed to remember it so clearly. I don't know.
And his cry. So deep down from his throat. He cried like no other baby I've ever heard...it was low pitched, and sometimes so quiet you wouldn't even notice. Such a sweet cry.
I remember his chubby little soft cheeks, and his PERFECT nose. Dustin and I always said Khoen looked too perfect to be ours. (We say that about all our kids. But I make this blog about Khoen, so I'm just focusing on him. No, I don't pick favorites.) And we were right.
Khoen wasn't ours....none of our kids are. They are God's. Khoen was His. He is His. And it still seems so unfair, but I know its not meant for me to understand.
I've been sitting in this rocking chair in my room, Khoen bear on my lap, staring at the crib that my boys were supposed to share until now. We said Mikah and Khoen could share the crib in our room until they were 6 months old, then we would put them in their own cribs in their room. Mikah is 6 months old now. Khoen never got to see that day.
I can't make myself think about decorating Mikahs room. I want to, yes. But I have their names in wooden letters, and I had never gotten a chance to paint them. I still plan to paint both, but I don't know how to decorate his room anymore. It will seem so bare to me with only one crib, even though I know it will be full.
Plus, I want to make a special place in the house for Khoen. A wall, or something, dedicated just to him. We don't have an extra room, so I dont know where to do it. I can't make myself hang Khoens name in the room they were going to share, because it would honestly break my heart every time I opened the door. So I have to make it Mikahs, and just Mikahs....but I'm still trying to figure out how to do that.
Sitting here rubbing Khoen Bears head and little legs helps and hurts at the same time. It's amazing to have him to hold, but I want so badly, more than anything right now, to hold Khoen again. I want to rub Khoens head, and see his birthmark, and hear him cry. I want to hear him make little noises, and try to figure out this world. I want to see him eat cereal, and I want to feed him his bottle. And I want so, so badly to see him smile, and hear him laugh.
God, this is so hard.
Khoen, mommy misses you so much, and I swear it seems like its getting harder sometimes as time passes. I just want to snuggled you again, cuddlebug. I know your happy, and for that I'm happy for you. I just can't wait to see you again. You are such a blessing, Khoen. And it honors that God chose me to be your mommy. Sometimes its just so much harder than you can imagine for mommy not to be selfish, and just want you here, with me, all to myself, forever. And I know that will happen someday. Mommy is just missing you hard today. I love you so much, and I hope you know that. I told you all the time, yet I feel I didn't get to tell you enough.
Sometimes its still hard on me too knowing that I missed Khoens last day. It kills me wondering how many times he smiled, or cried, and wondering if he noticed I wasn't there. I kissed him goodbye that morning, while he was still asleep. So precious and innocent. And so alive.
I hate this pain. And it breaks my heart whenever I hear of another mommy joining my circle. Another little angel going to play with Khoen in Heaven. It's just SO UNFAIR. That, and seeing little ones suffer, and struggle, going through battles with cancer and diseases....it just isn't right. And I get so scared then when I hear of those kids, because I don't want their mommies and daddies to understand this feeling. I don't want them to know it. I just want them to kick those illnesses in the butt and get better.
Our doctor has already warned us that there is a pretty good chance that Khoens death certificate will say SIDS on it. And I will have to live with that. But I can't shake the feeling that I should have done more.
When Khoens soft spot would swell, I always took him to the doctor. Or the hospital. I took him for his head ultrasounds. They said he would grow out of the extra fluid around his brain. That it was harmless.
But Khoen is gone, and he didn't grow out of anything. And I'm just not convinced it was all harmless. Which makes me feel like I failed Khoen as a mommy. I would have given him the world. I would have done anything for him, anything to make him better if he was sick. I'll never know if the fluid on his brain caused pressure, or gave him headaches.
I'll never know if my little boy was really ok, or if more could have been done to save him. He's gone now, and I just wish he weren't.
I've visited his grave multiple times this week, sometimes more than once a day. Makenna wants to ride by every night and make sure his "nightlights" are working. He has 2 of them. And sometimes, she will come to me crying, saying she misses Khoen and wants him to come home. It's so unfair to her, too. She shouldn't know this pain and loss at 4 years old.
But, I still fully trust God. I know He knows what he is doing, and my little Khoen had a greater purpose. I wholeheartedly believe that. Like I said in an earlier post, Khoens name means "Priest", and he is just that. He has shown all of us God in ways we hadn't seen before. And shown us that we won't get through this life without Him.
I will always love my son, and I'll miss him while I'm on earth. This pain may get easier to deal with, but it will never go away. And I dont think I will ever feel complete again. But I know I WILL see Khoen again. And I can't wait, baby boy. You are so special, so precious, so perfect.
I love you, Khoen Lee. Always and forever.
Wednesday, August 1, 2012
Dear Khoen...
Sometimes it helps me to write to Khoen, and I usually do it in my journal. But tonight, I feel like writing on here, so that's what I'm going to do. Talking to Khoen through letters makes me feel closer to him, and makes me look more sane than talking out loud while I'm out in public, and looking like a crazy schizophrenic lady.
And even though I know Khoen is in Heaven and can see the things that happen here (or I believe he can), sometimes I just want to tell him about it. I want him here so badly, and I want to share this life with him more than anything. So, until I join him in my eternal home, letters will have to do.
Dear Khoen,
Mommy is missing you SO much right now! And, although we seem to be moving forward somehow, life here without you still just doesn't seem right, or complete. But, there are amazing things happening here, Khoen, and some of them I just know are because of you. <3
There are so many people who love you, Kho....people who never had the earthly opportunity to meet you. But you are changing people, Khoen....and turning their faces to the One who holds you in His arms.
We've had some really rough days since you've been gone, and shed a lot of tears. But, we've also smiled for you, and we are slowly learning to smile for you a little more each day. Through all of this, I have to remember how lucky you are. You already know God, and that's the best gift anyone could ever give you.
A very good friend of mine, who has a little angel just like you (her name is Chloe, and I know you know her! Makenna says she is your girlfriend ;) ), lent me a book to read, called I Will Carry You.
That book helped mommy so much, Khoey, so so much. It made me realize that all this pain that I feel is normal, and reminded me countless times that I WILL see you again. I can't wait...mommy is going to scoop you up, and hug you so tight, and cover you in the kisses that I'm missing so much right now...all while soaking in the beauty of your precious smile. I'm crying just thinking of how amazing that will be.
Mommy has been wearing her 2 necklaces that have been given to me by such sweet friends, everyday. I switch off between the two. One says "My Khoen, My Angel", and has your birthstone, an angel wing, and a butterfly on it. It's so pretty. And the other says your name, has a little pearl, and has a set of tint little footprints on it. Tiny just like yours, baby.
Mommy has cried for you a lot lately. Sometimes the thought of never seeing you, smelling your sweet fragrance, hearing you cop, or learn to talk, makes mommy feel sad. Mommy wanted to show you so many fun things, Kho....how to walk, and throw and catch, and eat popsicles with you while letting you make a huge mess, and how to swim. I wanted to show you the ocean, and build sand castles with you, and I wanted to take pictures of every single moment.
But I know you've seen far more than I could have ever shown you, and you have the best Teacher of all. So you'll have to show me everything when I get to Heaven, big boy. And we won't need pictures, because we can live in those moments forever.
So now, when mommy gets really really sad, I hug my Khoen Bear. It's so neat, Kho. You would just LOVE it. It will never be the same as hugging you, ever. But, its still very special to me, because it was made just for you. And its a heavy little bear, just like you were, my little chunky man. I'll never be able to thank the people who made that possible enough. You are such a special little guy, Khoen.
So many people have helped us, Khoen. And I know you know who each of them are, and I know you have shown them the Lord. We pray every day that Daddy will find a job soon, and this huge financial burden will be lifted. But we just have to trust Him through it, and know we are in His hands, just like you are.
Mommy decided to look up the meaning of your name the other day, because I never did before you were born. We just knew we loved Khoen, and that Khoen suited you. And it is so perfect for you....your name means "Priest", Khoen.....which is exactly what you are, my little angel.
Mommy is still struggling with some things though, Khoey, and I'm having a really hard time right now. When mommy was at the hospital with you, during your big scare with your soft spot swelling, mommy made you a promise. I stayed with you all 4 nights, and rocked you, and cuddled you through the pokes and IVs and pain. And I promised you that I would never leave you, Khoen. That's the only promise mommy made you during your short life.
And then I left. I went to Charleston. I know you were in amazing hands with daddy, and I only did it to remind your big sissies that they are special to me, too. But, I left you. And the one time I left you, you left me to go to Heaven. That's so hard, baby. And I'm so, so sorry for breaking my promise.
I should have been there, Khoen. I try to tell myself over and over that I couldnt have changed what happened. I still believe Psalm 139:16,
"All the days ordained for you were written in His book before one of them came to be."
God knew how long I would have you here. I just wish I had known, so that I could have spent the last day of your life with you. I missed it, Kho. I missed the whole last day of your precious life. I missed smiles and laughs and cries, and now all I can do is cry. I'd give anything to have that day with you, but I can't.
I know. I have to keep my head up. Mommy has to be strong for Makenna, and Kaisyn, and Mikah, and daddy, and for you, Khoen. It's very hard sometimes. I just miss you so much. Please forgive me for breaking my promise. I would never have done that to you. I'm so sorry, baby.
Mommy was so excited to watch you and Mikah grow up together, and see the bond you two were going to have as twins. I wanted nothing more. So I have to ask you to please just stay close to Mikahs heart, as close as you can Khoen. Let him know you're there, and let him feel that bond. He needs you.
Brother did so good today at his eye doctor appointment, khoey! I know you were with him. Mommy is a little nervous about tomorrow, because I have to take Mikah to the same place I took you for your head ultrasound. It just makes me miss you more, Kho. Hannah is going with me (you know her little angel, Raidyn, too....Makenna says he is your best friend!). I'm glad she will be there to support me.
Hannah has twins in her tummy, just like mommy did when I carried you and brother. So you and Raidyn keep a close eye on them, and make sure things go ok. I know how exciting twins are, and how much it hurts when you don't have them on earth anymore, and I wouldn't wish that on anyone else in the world.
Well, Kho, mommy has cried for the last 20 minutes while trying to finish writing to you. But, somehow, I'm smiling right now. I know that's you making me smile, you silly little boy. You always can make mommy smile. You are perfect, Khoen....too perfect for this earth. Kiss grandmom and grandad for me, and tell them how much I love and miss them.
I can't wait to see you in heaven Khoen. And mommy will be there when God decides its my time to come home. Until then, keep helping mommy be strong, so I can be my best for your sissies and twin brother. I love you more than words can express. So much that it hurts. And I promise I will see you again, Khoen. Mommy misses you so much...be strong for me, too, little man.
And yes, mommy is crying again. So I'm going to hug Khoen Bear, and remember your sweet face, and dream of you when o finally drift off to sleep. I love you, baby boy. See you soon. <3
Love always,
Your Mommy.
Subscribe to:
Posts (Atom)