We need lots of prayers...

I don't have much time to post but I wanted to let everyone know that we found out on Friday through a routine kidney ultrasound that Nick has two large tumors on both his kidney's. The left is significantly larger, about the size of an orange. They believe he has Wilms' tumors. They are malignant. He will be admitted on Monday and will have a CT to find out if its spread. Then they are wanting to do chemo right away. Nick is in some pain as well, we think the mass is so large on his left side that it's causing pain in certain positions. He really likes to be laying flat and he has been sleeping a lot lately.
Please pray for us during this very difficult time.

Nick is a big brother!!

On Friday, February 24th 2012, at 9:41 a.m. we welcomed Carsen Jax Taylor Ketcham into the world!  He already has a few nicknames, including CJ and C Jax!
He is perfectly healthy and looks a lot like his older brothers. He weighed 8 lbs 2.8 oz and is 19 inches long. He is a breastfeeding champ even though he was down to 7 lbs 4 oz when we left the hospital on Monday.
Nick doesn't really like his cry, it is rather loud and ear piercing though!

We are trying to adjust to having a new little one around. Its not easy but with the help of our nurse and friend Maya, and the help of our family and friends its been a much easier transition than we expected...at least so far!
We are very blessed and praise the Lord that he is healthy and so far has no medical issues!

Long needed long post....about me

So I have been meaning to post about a few topics for awhile but it seems to always be the last thing on my list. But here it goes...
So I often get comments from people, usually family, friends or nurses, about how my hands are so full and 'wow, you handle so much!' I usually just laugh it off and just reply 'oh yes, I know.' But during the Christmas holiday I was able to sit down and speak to a few family members and discern that I really do handle a lot and what I do for my family is no small feat. (Thanks Grandpa!)

I am not bragging at all, trust me. But I just wanted to be able to write down how I am able to handle so many things and still be sane.  But first let me give you all a glimpse into my daily life and bear with me, this is long but I want to try and include lots of information for my own purposes!

So we have three, soon to be four, children.

Brianna is 6 and in 1st grade, she is the sweetest girl but can be dramatic sometimes, just like any girl! But she's my only girl and I love her to pieces. She is in 1st grade and has been in speech for a few years (but just got dismissed, yay!) and has had some trouble with reading and math-really no big deal. But it can be hard to find time to work with her and sit down and read the library books she brings home. I think I have the hardest time with that, not being able to give Brianna more time and I feel like I'm failing her in some areas. Plus there's always Brianna's 'other' family. Brianna is not Joe's biological child, even though he has helped raise her since she was 1. Her grandparents love to buy her things and take her places, but it's difficult because her father, Josh, has never really been in her life. His parents have always pushed for him to be but he just doesn't care. Recently though, he got married and had another child and it seems like his parents are again pushing for him to be around more. So they take Brianna on outings and usually Josh, his wife and son, are wherever they plan on going. It's frustrating not knowing if I'm making the right choices for Brianna regarding this situation. I know they are her family as well but it's hard not to see what they are doing as manipulative for both her and I.

Benjamin is 3 and is in preschool two half days a week. Most of my family and close friends already know this but Benjamin can be a rather difficult child. He is a very rambunctious, full of little boy energy and many times he just doesn't know where to draw the line. Many people may say 'oh, he's just being a little boy' and to a point that is true but Ben doesn't usually ever stop. Meaning, he's like the energizer bunny, without an off switch. I love my Ben very much but most of the time he is more work than Nikolas! And Ben is a little cutie and always says the funniest things, which makes putting him in time out even harder!

And of course, Nikolas, our sweet, laid back 17 month old. The one person who can take my frown away without doing or saying anything. Nick himself is really not hard to take care of. But he cannot sit up, walk or crawl, so he can't get into anything. But Nick always has seems to have a doctor appointment or a therapy class. We go to a wonderful place called the Lee Ann Britain Infant Development Center. Here, Nick goes to different therapies twice a week. Monday's we go for about an hour for speech/feeding therapy and occupational and physical therapies, then on Thursday's we go to what is called a baby class. There are about 7 other babies that are the same age as Nick, who get group therapy together. We do every type of therapy from feeding to aquatics to music. Its quite fun and I really enjoy seeing the other babies and how they are developing. Usually once a week we also have therapists come to our home through a state program called Infant Toddler Services. We have an OT and a vision specialist come out to work with Nick relating to almost every aspect of his daily life. They are always helping me figure out solutions to situations for Nick regarding sitting, sleeping, bathing, everything really! And once a month a nutritionist comes out with them to work on Nick's blended diet we have been doing for awhile. During the day I try to do different therapies with Nick, but lately with my giant belly it has been pretty hard and that does tend to ruffle my feathers, so to speak. I hate when Nick is just laying in one of his seats, or on his boppy pillow just with his pacifier and no one is interacting with him. Since he is not able to do much himself, mainly due to muscle tone and coordination issues, many times he will lay there and wait for someone to come play with him.
I hate it.
I hate that I cannot give him every second of my time. My heart breaks because I know he just wants to play or have someone interacting with him in any way. The most he can do by himself is roll around on the floor some and if you place a toy in his hand he might wave it around until he drops it but then its done, he can't pick it back up by himself. And he doesn't cry for someone to play with him, he doesn't even cry when he's hungry. He only cries if he's in pain or he might fuss a little if he's had too much stimulation or therapy. Nick does not have a lot of endurance to do much of anything but when he is awake and wanting to play I try so hard to make sure he doing something but many times I cannot play with him.
I do not think that Joe has the same mind frame when it comes to Nick. He doesn't see Nick as needing constant attention when he's awake. Joe helps a lot with Benjamin and Nick sometimes as well but many times it's Joe that will give him his pacifier and leave him there. I don't mean to make Joe sound like a bad father, he's not. I just wish he would put a lot more time and effort into helping with Nick and playing with him without me asking. Nick's care usually falls onto me, which I really prefer anyways but being 9 months pregnant and extremely tired is really starting to take it's toll on me. I admit that I sometimes do have anxiety about how I'm going to handle a newborn with everything else.
BUT recently Nick got approved for the TA (technology assistance) waiver. Basically it pays for a nurse or care person to come into your home for X hours a week. We were blessed enough to be approved for more than 40 hours a week of care. And our wonderful friend, Maya, is going to be one of the nurses that will come and help us with Nick! This is truly an answer to prayers!

Our fourth little one, Carsen, is scheduled to be born in 3 weeks! I cannot wait to meet him and add him to our wonderful family. I have had a relatively easy pregnancy so far, except I am starting to get the normal aches and pains from the last weeks weeks of pregnancy and it seems my energy level is slowly being depleted day by day. Lets just say I cannot wait to be done being pregnant!

I also am working towards my RN, ASN. I have taken all of my prerequisites except for two, Physiology and Microbiology. I am currently taking Physiology, the other I plan on taking this summer. This semester I am only taking online classes which really helps but it can be hard to plan time to make sure I don't fall behind. I am also taking a parenting class.



Okay, sorry, that wasn't supposed to be so long but I guess it is a pretty good insight into my life.

Back to juggling a handful, the first and main reason that I can handle such a full plate is that I do not do one thing by myself. God is with me every step of the way. I would not and could not do anything without His hand upon my shoulder.

I recently read a quote that I just loved-

The second reason I am able to handle a lot is I have an amazing support system of family and friends and fellow bloggers, nurses, therapists and a few doctors that make my life much easier. Our family is so blessed by almost everyone we come into contact with, even if they don't know it. I am usually able to take away something positive or helpful from every person we come in contact with. That's mainly my personality type as well though, I am a very optimistic person. My glass is always half full. God also made me a lot like my mom, with a lot of patience!

The third reason is that I don't dwell on everything I have to do. I don't stress over every little thing, even though sometimes it might seem an impossible task or chore. I just do what I have to do because I know this is the job that God has given me. God doesn't plan on me failing and neither do I. 

Love these verses:

Lastly, I am always reminding myself how blessed I am. My life is blessed in every way possible and by thanking God on a continual basis I am able to reflect on everything He has done for us and is doing for us. I know that God wants us to bring everything to Him, by praying. But after praying for something I don't continually ask and keep praying for it, I just continually thank Him for giving an answer to that prayer. Because He does have an answer and it is coming. By teaching myself to pray like this it has really helped  build my faith and remind me of my blessings. I also remind myself there are many families going through similar situations and their lives are no easier than mine, some families have much tougher situations than ours as well. I follow a few blogs and I truly admire all of the parents I read about and I get a lot of inspiration from them!

 Every tiny step that Nick accomplishes is huge to me, and I praise God each time. 

Well thanks for reading, if you've read this far! God Bless!

Lots going on!

So it's been awhile since I have written and we've had lots going on. Where to start...(sorry this is going to be long!)
We had a wonderful Christmas with family! My grandparents flew down from Minnesota, two of my sisters (and a boyfriend) and my brother flew in from Texas, Nevada and Florida and more siblings came from Manhattan, Kansas. My parents definitely had a full house...oh and my Aunt from Minnesota surprised us all on Christmas day! We had such a wonderful and blessed time! Nick loves Christmas lights so he always has the best time watching those when we put him under a Christmas tree, he'll also unravel some beading if he can get his hands on it!

Well Nick's eye is still healing. I would call it 'meaty' looking but his doctors say 'oh it looks good'.  Well since he has no lens in his right eye anymore they have to replace it with something. They wanted to put in a contact lens but even 2 months post-surgery the Optometrist felt like his eye was not healed enough and thought that putting in a contact lens would cause discomfort and irritation. 


So instead Nick got glasses! He looks so cute and grown-up!

They don't stay on as well as I had hoped but he doesn't mind them too much, we just have to realign 
them on his face all the time. We also patch his left eye for half the day to strengthen his right eye.


The retinal specialist here in Kansas City, Dr. Poulose, checked out his retina again last week. He saw a lot of scar tissue on Nick's retina. Not a good sign. Dr. Carvounis (the doctor from Houston) said if scar tissue would start to develop, he would try once to remove it but it's rare that it would work and if scar tissue continued to form there is nothing they could do because his eye would become very fragile and the chance of him losing his eye would be high. Dr. Poulose felt that because Nick's retina was already so fibrous, that even trying once to remove the scar tissue would be too risky. He felt like Nick's eye was stable, it wasn't irritating him and to mess with it would lead us down a path that would ultimately lead to needing the eye removed. Of course, I want Nick's to have the best possible vision he can. But I also feel that any vision is better than none. We will take the more conservative route and leave his eye alone. I would hate for him to loose his eye at this point. 
In March or April they want to sedate Nick so they can look at his eye's better and make sure the retina is still attached in his other eye.


We also met with the cleft team this past week. His surgeon, Dr. Kaye, feels that we could still wait to start repairing his palate but she said there have been recent studies that show that fixing his palate could  possibly help with other issues he has been having, like his reflux and aspiration issues. She wanted to discuss Nick's case with one of her partners first before deciding to do his palate this summer or wait until she feels he's bigger and more ready.
Dr. Burleson, an orthodontist, is part of the cleft team as well and he wants to get some X-rays of Nick's mouth. He wants to make sure that there are adult teeth and that he will have room in his cleft area for his teeth. It's a hard X-ray to get so they will do it when they put Nick under sedation for his eye exam.

We also met with his neurologist this week. I tried to explain these flailing type movements Nick has sometimes. I even had a few video's of Nick doing it that I showed her. Let's see if I can explain them...
Occasionally, without any type of stimulation that I can see and only while he's laying on his back or side, he will jerk his arms out and get a scared look on his face. If I am close to him I put my hand on him or pick him up and then he's fine. But if I don't, if I'm not right there to help him he will continually flail his arms in a jerking pattern and will eventually start to cry like something horrible is happening. If it gets that far it will happen over and over again throughout the day. In one of the video's that I showed her she felt like it could be a seizure, possibly infantile spasms which are very detrimental. So we are doing another EEG next Thursday to rule them out. I honestly feel like he has vestibular issues and actually feels like he is falling and gets scared. 


Here are a couple video's of what happens, they are not recent, one is early 2011 and the other is around -Easter 2011 (notice the candy!)-

He's so chubby in these video's! I just want to reach through the screen and pinch his fat cheeks!!

One last thing, Nick went to a seating clinic where they measure him and figure out the best devices for him in everyday life. They recommended a few things including a Kid Kart. Well Nick's insurance doesn't cover any type of seating or mobility device beyond a wheelchair so we were going to have to find funding or borrow from a coalition (as it's a rather expensive item). Well a wonderful family donated a Kid Kart to us! Their daughter had outgrown it were no longer in need of it! We are so blessed and it is exactly what Nick will need. It also came with a booster base that we can use at home and will be perfect for some therapies and allowing Nick to sit upright. We cannot be more grateful to such a wonderful family for thinking of us!

Nick thinks it's just great!

I lied, one last thing! We had a 4d ultrasound done just before Christmas and got some great shots of Carsen :o) He is still looking healthy! We have one last ultrasound to double check everything next week.

    

Just Pictures!

Just some fun pictures from our visits to Santa and Nick and Ben's Christmas program at the Lee Ann Britain Infant Development Center.

Whew!

Well, we just got home from a 2 night stay in the ICU at the local children's hospital....not fun!
Our oldest, Brianna, had some virus last week where she had a high fever one day, slept all day, and developed a slight cough during that time. She still isn't completely better but is back at school at least.

Nikolas, on the the other hand, started with a slight cough on Friday night, he wasn't acting sick and had no fever. By Saturday morning, you could tell he wasn't feeling good. I gave him a bath in the morning and by the time he was dressed and lotioned up, he started getting a fever. He wasn't acting himself and I could tell he was getting sick so I let him sleep the rest of the morning and the first part of the afternoon. He woke up around 2 and I had fed him while he slept (one bonus of the tube!).

Suddenly, his breathing started to sound extremely congested, kind of like when you need to clear your throat really bad. Well he couldn't clear it, he would try and cough but it would still sound the same. You could also tell he was starting to have a hard time breathing through the phlegm.

My dad needed help moving a new ac unit into their house so we headed over there. The whole (5 minute) drive was terrible. I kept trying to suction Nick with a bulb syringe and I would get some gunk, but the back of Nick's throat (where his adenoids are) is very sensitive, so I was also starting to get a lot of blood. So he's screaming, can't breath and can't cough enough to clear his throat....not fun.

My dad convinced us we needed to get him in, now. The local children's hospital has a branch hospital (but not as well equipped, as the downtown one) with an ER so we took him there, mainly because I knew he'd be able to see an actual doctor.

His oxygen saturation levels are at 85% and he is sounding terrible. I had given him ibuprofen earlier so no temp.

They deep suction him, lots more blood and a good amount of phlegm. The doctor decides he needs to be admitted, he knows he going to get worse and he's going to need oxygen and lots more suctioning.

Well in the 2 hour time period we are waiting to be moved upstairs, Nick's fever spikes to 102.7. His heart is racing in the the 200's and his respiration rate is in the 80's....not good.

They bring in another doctor and she decides he needs to go downtown to the main hospital. The transport team was on their way.

This whole time I am having terrible flashbacks of when Nick just had his second lip repair (back in Feb), we bring him home, take him to the same branch hospital and he has his first seizure. And actually, his symptoms are very similar and he ended up having RSV.
I am praying he doesn't have seizures this time....

They do blood work, and chest X-rays and cultures, but nothing turns up. It's just some nasty virus that Nick's little body can't seem to handle on his own.

Amazingly, Sunday evening he starts to do much better, no more fever and he doesn't need the oxygen or suctioning anymore. It seems as fast as the symptoms appeared, they disappeared.

So we spent two nights in the PICU and went home....very unusual. Normally you are sent to the floor first, then maybe the next day you get to go home. But he was doing so well they decided he could go home. Yes!

He's still not himself, very sleepy and cranky, it seems it hurts him to cough. But he's breathing fine and doesn't need oxygen.

I'm just happy we're home. Even more so right now because my Chemistry final is supposed to be tonight and I have not had adequate time to study. But my teacher is great, he said I could take the final anytime before Thursday....so thankful I have an understanding teacher!

BUT, now Ben is getting sick....it's a never-ending battle with the cold season. Hopefully, Joe and I can dodge the bullet though!

Oh, and I almost forgot to update about Carsen. He looks great! No abnormalities and growing perfectly so far. Praise the Lord! We can't wait to meet the newest addition to our family...

Big day Friday...

Friday is a big day for us. We go for our second level 2 ultrasound to see how baby Carsen is doing. Really, the only reason this is a big deal is because of Nick's recent 'possible' diagnosis of Lenz. From the little information I can find out about Lenz, mother's may not be carriers. Maybe I'm just reading into the wording a little too much but it does say IF....

 Lenz microphthalmia syndrome is inherited in an X-linked recessive manner. The risk to sibs depends on the carrier status of the mother. If the mother is a carrier, the chance of transmitting the mutation is 50% in each pregnancy: males who inherit the mutation will be affected; females who inherit the mutation will be carriers and will not be affected. 




This was taken from www.ncbi.nlm.nih.gov/ so I am assuming is pretty credible.

But the other reason I am a little worried is because this baby is having similar, 'shaky' movements like Nick did. I always thought Nick was having seizures in utero but we could never actually capture it on ultrasound or on the non-stress tests. I am praying it is nothing, that Carsen is fine, but all these things are starting to worry me, even though the first few ultrasounds looked great.

Nick didn't start having seizures until he got really sick and had just had surgery. So I'm thinking he never was having seizures before he was born. The only thing that I can think that the odd vibrating movements were is either my uterus is weird or when you push upward on the bottom of Nick's feet, they start to shake. Maybe that's what is was, and that would make perfect sense because when you push on his feet it only last for maybe 5 seconds which is about the same amount of time the shaking 'episodes' would last.
One of his OT's explained that his feet shake like that because of something to do with his neurological issues.

But if that's why Nick was doing it, and now Carsen's doing it....ugh, I need to stop worrying. I really can't handle much more stress right now. Brianna is sick again this week, possibly with bronchitis or strep. My Chemistry final is Monday, and I CANNOT get sick before that! And Christmas is coming up....

If you've read this far, sorry. It really helps me to get everything out but then be able to go back and see what I've written and re-evaluate.

I've been constantly reminding myself that God is in control. But something else I've recently decided to focus on is that all these trials we go through, all the heart ache and stress, they are actually blessing's from God. I know that seems backward, and it's hard to wrap my mind around it sometimes but He wants us to rely on Him 100%, and not just during the hard times. This thought process comes somewhat from Laura Story's Blessings song. I cannot control anything and I cannot do anything by myself, but with God's help I know we will be just fine, whatever the results.

Please pray for Carsen, for Joe and myself. Oh, Nick is doing great by the way, his eye continues to heal and the week before Christmas they are going to try and put a contact lens in, so we'll see how that goes!

I'll update as soon as I can on Friday after the ultrasound.