I woke up with a heave heart this morning for some very good friends of ours, Ashley and Steven. Today marks a year from when they went into labor with their sweet angel, Chloe. My heart just breaks for them all over again, and I wish I could wrap my arms around them and just make everything better. But I can't, so instead I am here beside of them, to support them in any way I possibly can.
The kids and I were supposed to go have breakfast with Ashley and some other amazing ladies, but apparently Mr. Mikah had other plans! And so started this long day...
I had baked my muffins for the breakfast, showered, and had the girls up and dressed. Makenna was supposed to be going to school, but I had already called her teacher and explained that she wasn't going to be there today.
Mikah had already been up for a little bit, but was playing happily in his bouncer while mommy got ready. When I went to get him dressed, I noticed that his eyes looked funny. They were red all around them, and a little swollen. He just didn't look great, and not like my happy little Mikah.
Upon picking him up, I noticed that he felt very warm, so I checked his temperature. He had a fever of 101.4, which just isn't good for my little guy. We are still watching him closely for this GA1 stuff, and we do NOT want to see him sick!
So I gave him some tylenol, and went ahead and let the girls know I wouldn't be able to make breakfast. Then I gave his doctor a call to let him know what was going on.
At our pediatric office, you leave a number for the nurses and let them call you back. And it didn't take them long to call, but while I waited I noticed that Mikah just really wasn't acting like himself. He wasn't very active, and just laid with his head on my shoulder.
Normally, Mikah is rolling and scooting everywhere, and will NOT lay down for anything! Yes, he falls asleep on my shoulder for naps, but he cries and fights it until he finally just gets too tired and gives up.
After being on hold forever while the nurse talked to the doctor, we got just the prognosis I expected: they wanted me to take him over to Levine's Emergency Room.
We walked in, our letter in hand, and they only left us sitting for a few minutes before bringing us back to the triage room to look him over. They did all the routine things, like checking his weight, blood pressure, etc. And sent us back to the waiting room until they had a room ready.
I wasn't happy about sitting in the waiting room in the first place, but it wasn't crowded at the time, and the 3 kids that were in there with their parents didn't look so bad off. Plus, we isolated ourselves as much as possible by sitting on the other side of the room.
But then, in walked a little boy with his mom, puke bucket in hand. That was enough for me, so Mikah and I decided we were waiting outside! My mom let the nurses know, and they said they would come get us when his room was ready. We just aren't taking chances like right now. My baby already didn't feel good. Plus, anyone who knows me knows I HATE puking. So we just enjoyed the cool weather and cuddled Mikah.
Once we got back into our little ER room, the "fun stuff" began. They listened to Mikah's chest and tummy, and looked him over from head to toe. The doctor ordered a urine sample and a chest x-ray.
A team of nurses came in with a child life specialist to do his catheter. Poor little guy, those things just aren't a good experience. The child life specialist was awesome, and brought some sugar water and a pacifier to try and divert his attention....but seriously, how can you ignore getting a catheter?!? Anyone who has had one knows...they just hurt.
So, of course, my little man screamed. Tear fest #1. :(
It only took them about half an hour to come back and tell us that his urine was clear, but they were also going to do a blood workup on him. Fortunately, there was a rocking chair in the room, so I was able to rock little man to sleep while we waited.
Next was his chest x-ray, and babies just don't tend to like those. I can remember when Kenna was only 3 months old and had RSV....she had to have a chest x-ray, and they had to put her in the "tubes". She was NOT a happy baby.
Mikah did pretty well, though, and didn't require the "tubes". He let mommy hold his arms up like a pro, but he did get a little upset because I couldn't let him move. Tear fest #2. :(
And as soon as we got back into the room, the same team of nurses was back to get some blood. They went ahead and put in an IV, in case they needed to give him fluids. Tear fest #3.....and the biggest of them all.
It took the nurse a little while to find the vein she wanted to use, and it took 3 of us to hold him down. Yes, my mom and two nurses had to hold him still, and I was trying to comfort him at his little head. He was just not having it. :(
But, he was ok again once he was back in mommy's arms. :)
By this time, he started to get a rash, almost like little hives on his little chest and back. The doctor thought they were caused by the fever, and had a nurse come take his temperature. It was starting to go back up, so they brought him some tylenol.
About an hour later, we FINALLY got the ok to go home!! The doctor said that all of his bloodwork was normal, and he had no increase in white cells, which would show infection. He has had a little bit of an upset stomach, so she said he may just have a little stomach bug, and just to keep a close eye on him.
We also got to meet Dr. Spence, the other genetic doctor, before we left. He also reassured us that Mikah's lab workups looked great, and he wasn't concerned at the time.
So we are just watching him! If his fever goes up high again, he throws up, or he just seems to be more miserable, we have to take him back over. Prayers please that this doesn't happen!! He wants to be at home with his sisters!
I think the hardest part of the day was leaving home to take Mikah, and kissing Makenna and Kaisyn bye. Makenna wasn't happy Mikah had to go to the hospital, and asked is he was going to come back home, or if he was going to Heaven. :,(
This whole situation has been so hard on her, and thats hard on me as a mommy. I promised her Mikah was coming home, and fought back tears. She is such a sweet big sister.
And while we were waiting in our little ER room, we heard a Code Blue called in Levine Children's Hospital. And that hit me in the gut for so many reasons.
First, when I was in preterm labor with the twins, a week after my grandad had his heart attack, it was about 6am, and we heard a Code Blue called in the Dickson Heart Unit. I commented to my nurse that I hoped it wasn't for my grandad, and sure enough, it was. And he passed away less than an hour later. So from then on I've known that Code Blue means someone's heart has stopped. :(
Hearing a pediatric Code Blue just tore me up. My heart hurt for the child, and for the parents, and family, and everyone who may be involved and love that child. It just isn't fair, and I have been praying since that they were able to save that sweet little one.
The girls were happy to see us when we got home, and I can't tell you how happy Makenna was to have Mikah back home again. She would NOT leave his side, and either sat on my lap with him while I rocked him, or laid beside his playmat on the floor. She loves her little sister and brothers so much, its precious. I am blessed!
Mikah is still very grumpy, but rightfully so...he had a rough day. And he doesn't seem to feel well tonight, so he is asleep on daddy's shoulder at the moment. It may be a long night, but anything to make my little ones feel better is worth it. I just pray we don't have any reasons to head back to the hospital!
Dr Lye explained to me that we have to go to the ER instead of his office even for little things like just a fever, because they can rush the tests there, whereas in his office they wouldn't have results until the next day. And there could be cases where that just isn't soon enough. So it will be ER trips for everything for now.
I'm just glad we are home now. The girls are sleeping, Mikah and daddy are sleeping, and I'm exhausted. So I'm going to go lay Mikah in his bed, and hit the sack myself.
Please say extra prayers for Ashley and Steven as they celebrate precious Chloe's first birthday in Heaven tomorrow. I know she is playing with Kho, and all of their other little angel baby friends, and having a blast. Just pray for peace of heart for the Friels, and all of us who love baby Chloe so much.
And thank you for your continued prayers for our little man! God is still so good!
Wednesday, September 19, 2012
Wednesday, September 12, 2012
Happy Thoughts
It's been a little stressful around here, to say the least!
Mikah has done amazing switching his formulas. I swear, he is a little pro. And he is just awesome....the dietician figured it would take us about 3 days to fully ween him off of his old and onto his new formula, but it only took him a day! That's my boy. <3
But he isn't so fond of waking up in the middle of the night to eat, so it's been a stuggle. He gets grumpy, and just mad that you are waking him up. That boy is just like my girls....he loves his sleep!
I was about to head out to Charlotte today to get his scale to measure out his formula, but then I got a call from his genetic counselor, who works along with his new geneticist. She said that they got back the results from the preliminary biochemical labs that they ran on Mikah, and that didn't seem to show that he has GA1.
We still have to wait 6 weeks to know for sure, because that is when his actual genetic tests will be back. But still, this could be amazing news!!!
Yes, if we get the results and he doesn't have it, we will be back to square one on both what is making Mikah's enzyme levels off, and on what happened to sweet little Khoen. But, GA1 just isn't good. And hopefully it is the worst case scenario, and anything else we may have to deal with won't be as dangerous!
So for now, we have one test that shows that yes, he has it, and one that shows that no, he may not. Our doctors want us to still stay with the new diet, and we still have to do the same thing when it comes to taking Mikah to the ER if he shows any signs of illness, with his note in hand.
But we are praying that the genetic tests will show that it isn't GA1! Statistics saying that people with GA1 only living until the age of 35 just won't cut it for this momma. My babies all deserve long, happy, healthy lives, and I'll do all I can to ensure that for them.
On another note, we are super excited about Khoen Day! I can't thank my friends Ashley and Taylor enough for planning this to help our family.
It will be exciting just to meet new people who are coming out of their way to buy BBQ and make donations in honor of our sweet son, who can't be there to give them a hug. But I can assure you Khoen will be there, and he will be beaming with pride at how many people are reaching out to help his family! God is so amazing, and the people who are helping us are incredible.
If you are coming Saturday and have already bought a ticket or made a donation, THANK YOU!!!!! And if you are coming and plan to purchase your food there, THANK YOU AS WELL!!!!
We will have the kids there for part of the day, but Dustin and I will be there all day! (Except when we make our delivery to Gastonia :) ) So please, make sure and give us a hug, so we can hug you back and thank you in person! You all are amazing, and we are more grateful than you will ever know. <3
Mikah has done amazing switching his formulas. I swear, he is a little pro. And he is just awesome....the dietician figured it would take us about 3 days to fully ween him off of his old and onto his new formula, but it only took him a day! That's my boy. <3
But he isn't so fond of waking up in the middle of the night to eat, so it's been a stuggle. He gets grumpy, and just mad that you are waking him up. That boy is just like my girls....he loves his sleep!
I was about to head out to Charlotte today to get his scale to measure out his formula, but then I got a call from his genetic counselor, who works along with his new geneticist. She said that they got back the results from the preliminary biochemical labs that they ran on Mikah, and that didn't seem to show that he has GA1.
We still have to wait 6 weeks to know for sure, because that is when his actual genetic tests will be back. But still, this could be amazing news!!!
Yes, if we get the results and he doesn't have it, we will be back to square one on both what is making Mikah's enzyme levels off, and on what happened to sweet little Khoen. But, GA1 just isn't good. And hopefully it is the worst case scenario, and anything else we may have to deal with won't be as dangerous!
So for now, we have one test that shows that yes, he has it, and one that shows that no, he may not. Our doctors want us to still stay with the new diet, and we still have to do the same thing when it comes to taking Mikah to the ER if he shows any signs of illness, with his note in hand.
But we are praying that the genetic tests will show that it isn't GA1! Statistics saying that people with GA1 only living until the age of 35 just won't cut it for this momma. My babies all deserve long, happy, healthy lives, and I'll do all I can to ensure that for them.
On another note, we are super excited about Khoen Day! I can't thank my friends Ashley and Taylor enough for planning this to help our family.
It will be exciting just to meet new people who are coming out of their way to buy BBQ and make donations in honor of our sweet son, who can't be there to give them a hug. But I can assure you Khoen will be there, and he will be beaming with pride at how many people are reaching out to help his family! God is so amazing, and the people who are helping us are incredible.
If you are coming Saturday and have already bought a ticket or made a donation, THANK YOU!!!!! And if you are coming and plan to purchase your food there, THANK YOU AS WELL!!!!
We will have the kids there for part of the day, but Dustin and I will be there all day! (Except when we make our delivery to Gastonia :) ) So please, make sure and give us a hug, so we can hug you back and thank you in person! You all are amazing, and we are more grateful than you will ever know. <3
Monday, September 10, 2012
The Scary Truth.
This morning we had Mikah's appointment with a genetic specialist. And we learned a lot about what is going on with our sweet little guy, but it was all very scary and overwhelming, to be honest.
The test that Dr. Jacobson ran on Mikah showed that he as a disorder called Glutaric Acidemia Type I. (GA1)
All proteins are made up of amino acids. And our body uses enzymes to break down these amino acids, and turn them into energy. But Mikah is missing certain enzymes, which means that his body just stores up these proteins that he can't break down, and they turn into toxins inside of his body.
The proteins that Mikah can't have are called Lysine, Hydroxylysine, and Tryptophan. (Lysine and tryptophan)
Both of these proteins are in the formula that both Mikah and Khoen were on since birth, which was Enfacare 22, the formula often used for preemies. So since birth, he has been storing up these proteins, and they have been, in a sense, poisoning his little body.
First we had to see a genetic counselor, and go through mine and Dustin's entire family histories. We talked about Mikah, and how his development has been, and about Khoen, and what happened with him.
Then we had to see the doctor. She is an amazing lady, and I feel like Mikah is in really good hands. She ordered another screen to be done just to confirm that this is truly what Mikah has, because it isn't extremely common. Only 1 in every 30,000-40,000 babies are diagnosed.
She examined Mikah, and looked at his development from what she could tell. She was mostly pleased with it, and said he is almost to where he should be, just to keep working with him daily...which I always do.
They taped a little bag around his private parts to catch his urine, so that they could run tests on it. But of course my little stinker figured out a way to pee right out of it and into his diaper, so it had to be completely re-done. And for the record, when a baby pees, it takes a while for him to pee again...
After that, we had to take him down to the lab for more bloodwork. They took 7 vials of blood from my little man. I know that may not seem like much, but it sure looked like a lot to me, complared to how little he is!
And our appointment still wasn't over. We had to talk to the dietician next, because they changed his diet TODAY. He is now on a formula called Glutarex, which she warned would be hard to get him to drink. And if you look online from the company (since glutarex can't be bought in grocery stores), it costs $224 per CAN. A can will last you 4 days on his diet, just to show how expensive this would be.
Fortunately, the dietician said that they always go through WIC to get this formula, so we won't have to pay for it. What a blessing, and a relief!
Anyways, this glutarex doesn't have either of the two proteins that he can't break down. But, we have a strict recipe to follow, because we do still have to mix in a small amount of his old formula. Not enough to hurt him, but enough so that he is getting all of the nutrition that he needs.
He can eat the baby cereals, fruits, and some vegetables, but all only in moderation. (I now have a chart hanging on my fridge.) But he CAN'T have anything that contains milk, cheese, eggs, or meat right now. Not to big of a deal, as he is still so little.
The doctor said that by staying on the diets given to us, and being VERY strict about it, Mikah should be able to relax a little on his eating by the time he is 7. But he won't even be able to try chocolate until then. :(
And for the record, at 1:30pm he FINALLY peed in his bag, so that we could go home...3 and a half hours after the appointment started!
The risks of GA1 are what is so scary. Had we not caught this, Mikah could have suffered a "metabolic crisis." And in people with this disorder, that can cause strokes, comas, permanent brain damage, and death.
Brain damage is the biggest concern with GA1. And even while he is on treatment, he has a 35% chance of suffering brain damage of some kind, from moderate to severe. THAT is terrifying. :(
But we have no choice but to be thankful at this moment. I wish we had caught all of this before Khoen had to suffer from it, but Mikah is here, and he is ok right now. And he is on his diet, and we are going to do all we can for him, to give him a normal happy life.
The dietician said that we can wean Mikah onto his new formula, but to do it as quickly as possible. She said to start with 1oz of glutarex, and 4oz of enfacare. So that is what we did for his 9pm feeding.
The other thing that makes all of this so scary is that if Mikah were to get sick, it could very quickly put him into a metabolic coma. And even if he were to come out of his, he would have severe permanent brain damage from it.
The main thing we have to watch out for is the stomach virus. Mikah can't tolerate throwing up. If he gets a cold and has a fever, as long as he is still eating well he should be fine, and get through it. But if he starts throwing up, we have to take him straight to the hospital.
We were even given a note that we have to carry everywhere. We literally have to keep it with us at all times. And if anyone watches Mikah for any period of time, no matter how short, they have to have a copy of it. And if he shows any sign of illness he has to be taken straight to the ER at Levine, and the note must be given directly to the staff.
The note states that Mikah has GA1, and that he is extremely high risk. It says that if he shows any signs of being ill ie. throwing up, lethargy, fever, loss of apetite, dehydration, pretty much anything where he may not be getting proper nutrition, he is to be admitted into Levine Children's Hospital, immediately hooked up to IV's and given fluids, sugar, and nutrition, and observed. They are also to call in the genetic specialists there at Levine, and if for any reason they are unavailable at the time, they are to contact the hospital at Duke.
My nerves are on edge, though, because Makenna is in preschool. And we all know how germs fly around those classrooms. My main concern is that she will bring home a stomach bug, because that is the thing that Mikah can NOT tolerate. And it terrifies me to think of him throwing up and possible going into a coma, and never having a normal life because of it.
The genetic specialist said that they have two other patients that have this disorder. One is a baby, whose disorder was picked up on his newborn screen and has been on his special diet since birth. And he is doing well, and hasn't had any issues.
The other is an 8 year old little girl who, at the age of two, caught the stomach flu. She went into this metabolic coma they have warned me about, and woke up, but is severely brain damaged. :(
So in all seriousness, as much as we love you....if you are sick, or have been sick, or just aren't feeling well, please don't come by to visit! Haha :)
I'm trying to just stay as positive as I can, but the doctors have fairly warned me that this is serious, and his dangers are real. So we have to be very strict, and he absolutely has to eat every 4 hours. No more sleeping through the night until who knows when!
But still, as I sit here with knots in my stomach, I know that I am about to go upstairs and just fully turn this over to God. He will take care of Mikah, and of us as his parents, and guide us on what we should do.
This is going to be a long journey for him, and something that will have to be watched closely all of his life. So please continue to keep him in your prayers.
We need Mikah here, and we need Mikah strong. And he is going to push through this!
And pray extra hard for a miracle....that his test they did today to confirm and further test which genes of his are mutated and caused this disorder comes back and says that he is fine, and it was all just a scare.
Doubtful, yes I know....but a girl can dream, and God is amazing. <3
ALSO, they confirmed for me that the state keeps babies new born screening tests for three years after birth. So, if their test does confirm what they believe to be true, they will call the state and ask that Khoen's newborn screen be run again, to ensure he did in fact have this disorder as well. If he did, his cause of death will be contributed to this.
And I know I wrote in another blog about how when Khoen was in the hospital, we considered transferring him over to Levine's. (Maybe I didn't, I dont remember, but either way, I'm telling you now. We considered it.)
We only considered this because after they did a spinal tap on Khoen, they didn't really do anything else. They just didn't really give us any reason as to why my son didn't wake up for almost 3 days, and we weren't happy about that.
The specialist today told me that they indeed should have done further testing, and considered something neurological. Had he been at Levine, the neurology team would have probably been called in, and we may have been able to catch it in time.
I know I can't dwell on the woulda-shoulda-coulda's, but its hard...it hits me in the gut, because I really cried over that while we were in the hospital. But we prayed about it, and talked about it, and decided we should leave him where he was. We figured they were the doctors, and they knew best.
But the thought that maybe I could have done something more to save him hurts my heart so much, because once again, I feel like I failed Khoen. And I would have done anything for that little boy, just as I would Mikah, Kaisyn, or Makenna.
Please pray for strength for our family as we get through this. We love you all, and can't thank you enough for thinking of Mikah on his big day. <3
The test that Dr. Jacobson ran on Mikah showed that he as a disorder called Glutaric Acidemia Type I. (GA1)
All proteins are made up of amino acids. And our body uses enzymes to break down these amino acids, and turn them into energy. But Mikah is missing certain enzymes, which means that his body just stores up these proteins that he can't break down, and they turn into toxins inside of his body.
The proteins that Mikah can't have are called Lysine, Hydroxylysine, and Tryptophan. (Lysine and tryptophan)
Both of these proteins are in the formula that both Mikah and Khoen were on since birth, which was Enfacare 22, the formula often used for preemies. So since birth, he has been storing up these proteins, and they have been, in a sense, poisoning his little body.
First we had to see a genetic counselor, and go through mine and Dustin's entire family histories. We talked about Mikah, and how his development has been, and about Khoen, and what happened with him.
Then we had to see the doctor. She is an amazing lady, and I feel like Mikah is in really good hands. She ordered another screen to be done just to confirm that this is truly what Mikah has, because it isn't extremely common. Only 1 in every 30,000-40,000 babies are diagnosed.
She examined Mikah, and looked at his development from what she could tell. She was mostly pleased with it, and said he is almost to where he should be, just to keep working with him daily...which I always do.
They taped a little bag around his private parts to catch his urine, so that they could run tests on it. But of course my little stinker figured out a way to pee right out of it and into his diaper, so it had to be completely re-done. And for the record, when a baby pees, it takes a while for him to pee again...
After that, we had to take him down to the lab for more bloodwork. They took 7 vials of blood from my little man. I know that may not seem like much, but it sure looked like a lot to me, complared to how little he is!
And our appointment still wasn't over. We had to talk to the dietician next, because they changed his diet TODAY. He is now on a formula called Glutarex, which she warned would be hard to get him to drink. And if you look online from the company (since glutarex can't be bought in grocery stores), it costs $224 per CAN. A can will last you 4 days on his diet, just to show how expensive this would be.
Fortunately, the dietician said that they always go through WIC to get this formula, so we won't have to pay for it. What a blessing, and a relief!
Anyways, this glutarex doesn't have either of the two proteins that he can't break down. But, we have a strict recipe to follow, because we do still have to mix in a small amount of his old formula. Not enough to hurt him, but enough so that he is getting all of the nutrition that he needs.
He can eat the baby cereals, fruits, and some vegetables, but all only in moderation. (I now have a chart hanging on my fridge.) But he CAN'T have anything that contains milk, cheese, eggs, or meat right now. Not to big of a deal, as he is still so little.
The doctor said that by staying on the diets given to us, and being VERY strict about it, Mikah should be able to relax a little on his eating by the time he is 7. But he won't even be able to try chocolate until then. :(
And for the record, at 1:30pm he FINALLY peed in his bag, so that we could go home...3 and a half hours after the appointment started!
The risks of GA1 are what is so scary. Had we not caught this, Mikah could have suffered a "metabolic crisis." And in people with this disorder, that can cause strokes, comas, permanent brain damage, and death.
Brain damage is the biggest concern with GA1. And even while he is on treatment, he has a 35% chance of suffering brain damage of some kind, from moderate to severe. THAT is terrifying. :(
But we have no choice but to be thankful at this moment. I wish we had caught all of this before Khoen had to suffer from it, but Mikah is here, and he is ok right now. And he is on his diet, and we are going to do all we can for him, to give him a normal happy life.
The dietician said that we can wean Mikah onto his new formula, but to do it as quickly as possible. She said to start with 1oz of glutarex, and 4oz of enfacare. So that is what we did for his 9pm feeding.
The other thing that makes all of this so scary is that if Mikah were to get sick, it could very quickly put him into a metabolic coma. And even if he were to come out of his, he would have severe permanent brain damage from it.
The main thing we have to watch out for is the stomach virus. Mikah can't tolerate throwing up. If he gets a cold and has a fever, as long as he is still eating well he should be fine, and get through it. But if he starts throwing up, we have to take him straight to the hospital.
We were even given a note that we have to carry everywhere. We literally have to keep it with us at all times. And if anyone watches Mikah for any period of time, no matter how short, they have to have a copy of it. And if he shows any sign of illness he has to be taken straight to the ER at Levine, and the note must be given directly to the staff.
The note states that Mikah has GA1, and that he is extremely high risk. It says that if he shows any signs of being ill ie. throwing up, lethargy, fever, loss of apetite, dehydration, pretty much anything where he may not be getting proper nutrition, he is to be admitted into Levine Children's Hospital, immediately hooked up to IV's and given fluids, sugar, and nutrition, and observed. They are also to call in the genetic specialists there at Levine, and if for any reason they are unavailable at the time, they are to contact the hospital at Duke.
My nerves are on edge, though, because Makenna is in preschool. And we all know how germs fly around those classrooms. My main concern is that she will bring home a stomach bug, because that is the thing that Mikah can NOT tolerate. And it terrifies me to think of him throwing up and possible going into a coma, and never having a normal life because of it.
The genetic specialist said that they have two other patients that have this disorder. One is a baby, whose disorder was picked up on his newborn screen and has been on his special diet since birth. And he is doing well, and hasn't had any issues.
The other is an 8 year old little girl who, at the age of two, caught the stomach flu. She went into this metabolic coma they have warned me about, and woke up, but is severely brain damaged. :(
So in all seriousness, as much as we love you....if you are sick, or have been sick, or just aren't feeling well, please don't come by to visit! Haha :)
I'm trying to just stay as positive as I can, but the doctors have fairly warned me that this is serious, and his dangers are real. So we have to be very strict, and he absolutely has to eat every 4 hours. No more sleeping through the night until who knows when!
But still, as I sit here with knots in my stomach, I know that I am about to go upstairs and just fully turn this over to God. He will take care of Mikah, and of us as his parents, and guide us on what we should do.
This is going to be a long journey for him, and something that will have to be watched closely all of his life. So please continue to keep him in your prayers.
We need Mikah here, and we need Mikah strong. And he is going to push through this!
And pray extra hard for a miracle....that his test they did today to confirm and further test which genes of his are mutated and caused this disorder comes back and says that he is fine, and it was all just a scare.
Doubtful, yes I know....but a girl can dream, and God is amazing. <3
ALSO, they confirmed for me that the state keeps babies new born screening tests for three years after birth. So, if their test does confirm what they believe to be true, they will call the state and ask that Khoen's newborn screen be run again, to ensure he did in fact have this disorder as well. If he did, his cause of death will be contributed to this.
And I know I wrote in another blog about how when Khoen was in the hospital, we considered transferring him over to Levine's. (Maybe I didn't, I dont remember, but either way, I'm telling you now. We considered it.)
We only considered this because after they did a spinal tap on Khoen, they didn't really do anything else. They just didn't really give us any reason as to why my son didn't wake up for almost 3 days, and we weren't happy about that.
The specialist today told me that they indeed should have done further testing, and considered something neurological. Had he been at Levine, the neurology team would have probably been called in, and we may have been able to catch it in time.
I know I can't dwell on the woulda-shoulda-coulda's, but its hard...it hits me in the gut, because I really cried over that while we were in the hospital. But we prayed about it, and talked about it, and decided we should leave him where he was. We figured they were the doctors, and they knew best.
But the thought that maybe I could have done something more to save him hurts my heart so much, because once again, I feel like I failed Khoen. And I would have done anything for that little boy, just as I would Mikah, Kaisyn, or Makenna.
Please pray for strength for our family as we get through this. We love you all, and can't thank you enough for thinking of Mikah on his big day. <3
Sunday, September 9, 2012
So Many Tears...
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
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
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
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