Home With Honor

Home from Chile

We all went to the airport to look for Kyle. It was a BIG DAY. As for me, I hadn't seen Elder Kyle Grimes since Christmas 2009. As for Jake, he has never met my amazing little brother!

 All the kids together for the first time in years! Note that I am the shortest and that my 14 year-old sister looks like my older twin.

 He was so excited to show us everything he had brought home, that he started unpacking the second we walked in the door. He had some amazing things to show us! A lot of what he brought were gifts from the Pobletes, a family Kyle became very close to in Chile. They fed him all the time and took care of him for us. They sent us many gifts and had to sacrifice for them all.

In the picture above Kyle is giving my mom some beautiful pillow cases that Sister Poblete made her BY HAND. They're satin and have pleates and little beads all over. They are beautiful and she stayed up until like 4 AM making them he said. This family does not have a lot, and so they really had to sacrifice. They are so sweet.

 Next, my wonderful grandparents came into town. They live in Arizona and so we don't get to see them a whole lot. This was a special treat. Grandma picked up Jake and tears just came to her eyes. I think Jake carries a soft spot in their hearts. I also think they were blown away by how much he's changed since they saw him this summer.

 I don't remember this picture being taken, but I'm glad someone took it.

 Jakey and Uncle Bob. The top picture is Jake wearing the cutest little Chilean hoodie Kyle brought home for him. I got a cool one too so I'll have to take a photo of me wearing mine.

I think they adore each other... what do you think??

My mom made Jake two adorable little ties for his birthday

Always a crowd of people around the baby when we visit!

Passing out after Thanksgiving dinner. We re-did Thanksgiving since we haven't had one together in a very long time. It was, as you can see, de-licious.

The plane ride by myself with a baby wasn't too bad. He is, after all, a very good baby. He did cry for a little while as is expected of babies traveling all day and being expected to hold fairly still. But Yo-Gabba Gabba probably saved my life.

As well as going to the dollar store and buying some new books which I put in baggies along with some treats. We had a fun mommy-son getaway!

A Big Week

MRI DAY

 Baby had to get his MRI done: the first since he was born. He'll get a CT scan every year, but this year they wanted to do a full MRI. The not-so-great thing about it was that they had to put him under for it, IV and all, so he wouldn't move during the procedure.

This is us in the prep room, waiting to get Jake's IV.

He was terrified and screaming, crying, and hugging me when they started his IV. It broke my heart and my hands were occupied, thus, no pictures. And to top it off the first IV blew so they had to do it again. I picked him up and started singing to him while they put the medicine in and then he fell asleep in my arms, which was really upsetting. He just went limp. It made me tear up a little just thinking of all the times we will have to undergo the same thing, or the same thing + brain surgery.

But we went out into the hall and waited (my lovely mother-in-law was with me) and it took about an hour. He woke up great and got to drink some apple juice. Next we had a neurosurgery appointment on another floor so we headed there.

The surgeon was able to access the new MRI info right away. We got to see the old MRI vs. the new MRI. Wow, was that amazing! In his old MRI his whole head was mostly fluid with a tiny bit of brain in the front. Friday's MRI showed that the brain is filling in VERY nicely! It also revealed something unexpected, a very large cyst right on the top of his brain. It's probably about the size of a cutie orange. They couldn't see it before because there was so much fluid, but now it's visible. I freaked out for a minute, until the doctor explained that many people have cysts and they don't do anything. Jake's is just very large because the hydrocephalus has filled it with fluid (since hydrocephalus means extra fluid in the brain) but he was confident that it wouldn't cause any problems and we wouldn't have to do anything about it. He said it should shrink as Jake gets older and it shouldn't interfere with brain growth or anything.

We could see the shunt catheter go right through the cyst. The doctor said that the end of the catheter is still surrounded by fluid, so that means the shunt will probably last a little while longer before becoming clogged and failing. However, he said that as his brain grows that spot will fill in.

There were a couple of really exciting things he said to us. He said he thinks Jake is a really good candidate for a surgery called a Third Ventriculostomy. It's where they would go in, put a hole in the brain tissue where the fluid could drain properly, and then he would be able to be shunt free!!! Not everybody is a candidate, and not every surgeon will attempt the surgery. But he said that the older he gets, the better the chances are that the hole will stay open and not heal. We're really aiming for 2 and older. Hopefully his current shunt will last at least another year, then we can try the new surgery! Huge blessing!

He also looked at Jake and talked to me about his skills and said, "Well he's definitely above his skill level for kids his age with hydrocephalus. Especially with the size of head he's got. You're doing a good job with him". YAY!! It helps me to hear that. It makes me feel like I'm not failing. It was a day full of good news.

Here are some pictures from today I thought I'd share.

Here is Jake in his leg braces, standing on his own! His physical therapist has his legs in this picture, but a couple minutes later she only had one hand on his back, and then another minute later, she let go! It's astounding what he's accomplishing at barely 12 months.

Next, he even took a few steps (with a lot of help) but it was the first steps he's ever felt. I don't have pictures because I was trying to distract him and needed both hands to do so.

After a long and much-needed nap, we tried finger painting. I have found a couple sensory blogs that I've been following, and one of them had this great recipe for chocolate finger paint. It was easy since the only ingredients are hot cocoa mix and a little bit of water.

Not so sure what the finger paint is for... but we'll kep trying. I mostly did it for him, but it was still good sensory play.

After that, we tried playdough. I made the salt kind. We've been trying out playdough over the last week and he hasn't been so sure about it. He doesn't really like hand and arm sensory stuff which is another reason I'm committed to doing it more.

But today he actually liked squishing the dough.

Pulling at it. Not too sure...

Have to taste it! Yuk!

And one cheesy pose because he LOVES posing for the camera.

And that was our busy but fun day of trying new things!

P.S. If you haven't checked out my added stuff on the "Jake's First Year" page, check it out. It's a work in progress,but I"m getting there.

BIRTHDAY

How has it been one year already? A year ago I got the best birthday present ever. Happy Birthday Jake, you are so precious.

 Yummy Birthday Cake!



Just one of those days.....

Ugh. Today was just one of those days!! I've been trying to hold off making new posts until Jake's first year synopsis is completed, but I'm giving up because I just need to post about today.

I know most of the time things just seem to be going good and Jake seems to be making progress and all is well. But not every day is like that. I know I'm not the only mom out there who feels that way, and especially not the only hydro-mom either. Every mom has to deal with hard days no matter who you are. It's the lack of sleep/fighting with your kids/trying to keep everything in some kind of order syndrome, and it's normal, but today was just awful.

With therapy there are so many ups and downs. It seems like it's 2 steps forward, 10 steps back. Therapy is pretty much my life. I try to do it every single day and most days out of the week at least one person is coming over to do therapy with Jake. But it's becoming harder and harder to do therapy by myself! Jake is getting so big and so stubborn. Usually his Physical Therapist (PT) or Occupational Therapist (OT) are putting him into position and doing the exercise and I'm in the front of him trying to entertain him with a toy so that he'll cooperate and be interested. When I'm by myself, I don't have anyone on the other end to keep him occupied, and I'm usually by myself because Kenny's so focused on getting through school that he leaves early in the morning and comes back later at night after Jake's gone to bed so he can't really help me.

Today Jake had OT and it seemed like she had mostly negative things to say. She wasn't saying anything in a mean way, just a way that made it sound like Jake has SO FAR to go and it made me feel so discouraged because I know she's right. Here's the list...

1. Jake is not supposed to be putting so many things in his mouth all the time at this age anymore so she said he's not able to focus on things around him when he puts things in his mouth.
2. His arms and hands are very sensitive so he won't let you direct them to help him learn to do certain activities or put pressure on them.
3. His legs and feet are also sensitive so he's not putting weight through them like he should.
4. He's not interested in clapping, waving, or anything of the sort.
5. He hates learning to crawl and he doesn't want to lift up his head for it.
6. He's not interested in many toys kids his age should be interested in, or activities that they usually do. He doesn't care about shape sorters, dry beans in a bowl, etc.
7. His left hand likes to stay closed more than the right which is hindering his hand skills with toys and food.
8. He doesn't know how/ doesn't get how to pull things very well... handkerchiefs out of a can, etc. do not interest him at all.

Those are just the ones I can think of off the top of my head. It just feels like the list gets longer and longer every day. That's seriously about half of everything I have to work on with him every day! And does it always get done? I'll admit, no. So when his OT comes and she's telling me all this stuff that he's not doing or is doing that concerns her, it just makes me feel horrible because I know it's my fault for not being as on top of things as I should. Sometimes I get complacent and I feel like I can just let him lay on the ground for a minute and play, but really I shouldn't. Every second of the day should be structured. I'm considering making myself a daily schedule so that I remember to do everything.

(This is how we try to get him to learn to use his legs to crawl)

It's just so exhausting! Every day is fighting, fighting, fighting until one or both of us is resolved to tears. Today it was both of us. I just had the realization that no matter how much I do for him it will never be enough. There will always be something more I could have done or something more I can do and I just feel extremely alone in it. It's so exhausting being in charge of your baby's development anyway, let alone if they have special needs and I know I'm the only one who is with him enough to know how to help him. There are those of you out there who I think of in times like these because I know you know how I feel: Cathy Layman, Julia Baker, Shannon Daniels, and Stephanie Jones to name a few. Being your child's advocate, voice, and main therapist can get discouraging. I start feeling so guilty because I know I must not be doing enough if he is still so sensitive to weight-bearing, and all the other things.

I know what the human brain can do in children, how it can repair itself, and so it's up to me to help him make those connections and catch up! Jake IS pretty smart. He can catch onto things, but the fact that it's taking him a long time just makes me feel so down sometimes. Almost every day I think of my friends and family who can just set their child down and let them play without having to help them do simple things, who can just watch their child learn to crawl and walk without having to move their arms and legs for them or do work on a yoga ball every day to hopefully get them to move. With the movement comes cognitive development and so the two go hand in hand. It's hard to see my baby behind and not understanding things he should be understanding and just hoping that if I work with him hours every day he'll get it.

So yeah, usually when I write about therapy it will be about the good and exciting things that are happening. But today was just a day when it felt like we went a football field in the wrong direction and I'm so exhausted! Let's just hope next week is better :)

36 weeks: My Last Week of Pregnancy

I'm having my c-section next week! I can't wait! I'm so ready to be done being pregnant. I'm huge, hopped up on meds, and I'm tired of being in the hospital already. I guess it's time to start making my blog nice and pretty because from here on out there's going to be a lot of updating to do. Until next week it's just a waiting game though. And I don't have my camera USB cable with me here at the hospital although I have been taking pictures. So this is a picture from my phone and for now it's going to have to do until my husband can bring the USB from home.

Well, I guess I'll just go over the whole story of how I landed myself here! The details are a little blurry because this medication is disorienting and I've been on it for a week so things have tended to slip out of my mind. I have a hard time forming coherant sentences and I'm pretty sure it's going to show in my blogging, but oh well. I'll try to make it understandable!

So two Saturdays ago I woke up in the middle of the night with back pain that lasted for about two hours and I couldn't sleep. But then it went away so I just went back to bed. It happened again the next night and although I initially wondered whether it was back labor or contractions, I noticed it was right on my kidney and whenever I touched my kidney it was tender. Monday I had a dr's appointment and I mentioned it to my doctor and he said just to keep an eye on it because sometimes the kidneys can become blocked in pregnancy. Also, at the doctor Monday we found out that the baby's head is about 50 cm. If you want to know how big that is, measure your own head, you may be surprised! It's huge. Anyway, Tuesday morning the pain in my back came again and became painful enough that I was having to breath through it and so I called my doctor and they told me to come to the hospital to get it checked out. I thought that was a little excessive since I could still talk through the pain.. I didn't think it was THAT bad, but I came nevertheless. When they hooked me up to the monitor they could see that I was indeed having contractions and they started coming closer and closer. My doctor said, " Well, I can tell you now you're not going home tonight" and they put me in a room. As soon as he left my contractions started coming like 3 minutes apart, it was crazy. Apparently they were pretty strong too but to me it just felt like some pain in my kidney and honestly not even as bad as periods I've had before. Just goes to show how stupid I am, I didn't even know I was in labor! You always hear people say, oh you'll know, but I did not know at all. And I don't think I would've known unless I had been here.

So they started an IV and got me on magnesium sulfate to stop the contractions which is a muscle relaxer and pretty potent stuff. It makes you feel like you have the flu as well and you can't focus on things. I managed to read a book, but it was difficult and not very enjoyable because I just felt like I couldn't care about it or get into it. It kinda makes you feel ho hum about things... it's weird. They tried to wean me onto a pill instead so I could go home for a little while, but that didn't go over well. As soon as they dropped the medication levels my contractions and pain came back. So here I've been since Tuesday... Thankfully they've dropped my medication levels twice just so I can be a bit more comfortable. It starts feeling like you're trapped in your own body and furthermore I'm trapped in this room and not allowed to even get wheeled around the halls. I really feel for people who have to spend their lives in the hospital! Especially people who don't have family or other support. Kenny has been sleeping in a chair next to me most nights. I feel so bad for him. He's trying to keep going to school and he's doing great even though all of this is going on on the sidelines. I know it's not easy but he's really supportive and I look forward to when he comes to see me during the day.

Jake is getting so huge, he just hurts. I told the doctor "it feels like I'm having twins, seriously" and he said "well, in a way you are because your baby's head is just so big". I LOOK like I'm having twins and I know I'm way bigger than I normally would be. I'm all swollen from the medication, which is super attractive also, haha.

So the doctor says I'm in here for another week and my c section will be next Monday, Tuesday, or Wednesday: he's trying to get it scheduled. He said for sure I'm getting the vertical (or classical) c-section cut in the skin, but depending on how things look he may be able to go horizontal on my uterus, which would be awesome! Hopefully that would work but no guarantees. I know it's going to be hard to get the baby out as it is. The doctor said he's going to have forceps and a vacuum ready because he'll probably need one or both of them.

Well, that's about all. Meanwhile I'm just waiting. I can't wait to get this baby out of me even though I know the c-section is going to be difficult because he's so huge. I just can't wait to get on the road to recovery and get back to a somewhat normal life. And hopefully Jake's surgery (or surgeries) will go smooth as well. It's just hard to sit here and think and speculate~ let's get going! :)

well I think that's about all. thanks everyone for your thoughts and prayers, we love you and we think of all of you too.

32 weeks And a picture

OK, so I'm 32 weeks and 3 days. But would you really guess that from this picture? Let's be honest... I'm HUGE. And please excuse my bathroom. Kenny wasn't here to take a picture for me.

Yesterday I had another doctor's appointment. He didn't measure the head this time, but I did get some news. Apparently the doctor is going to try to deliver him as close to 39 weeks as possible. I mean, it makes sense because Jake needs to be as developed as possible to have a better chance at a better recovery after surgery and all that. But or 7 more weeks of growing?? Can I do that?? I measured at 38 weeks yesterday and boy, do I feel it. I'm not sure... if I go to 39 weeks will I measure in the 50-week range? The doctor also said that if I go into labor on my own fairly soonish than I may be able to have a regular c-section cut. BUT if Jake stays in until he wants him to I'll have to have the vertical cut. I know it's the best for Jake and I want to do everything that's best for him, but yeah... sometimes I just wonder, "why couldn't everything just be normal like the babies everyone else is having?" I guess that's just how it goes.

Everyone I see or talk to thinks I must be due any day or having twins. HA . That's funny :)

Well, that's my current update! We'll see if I make it through February without a baby or what!

31 WEEKS! Here's a lot of information crammed into one post

I'm officially in my 31st week of pregnancy. I can't believe how fast it's going. Espeically since this means we only have about 4 weeks left until we're parents.... we think. :) Nothing's ever certain and the doctor can't give us an actual time frame yet. I know I'm lame and I don't have a picture with this post, but I'll post one soon when we get a camera which is hopefully this weekend.



So.. here's an update on Jake! We have met with both our pediatric neurologist and neurosurgeon, both of whom we LOVE and are so happy to have. Combined with our specialist OB Dr. Carpenter, we have the dream team of doctors and we couldn't be more pleased with them. I'm basically going in every week now for monitoring to my OB-GYN. Jake's head is about term size now (or larger), the size of a baby at about 40 weeks and the fluid is still there. Two weeks before we got that news, we learned that his head had grown significantly, but at the last appointment it hadn't really grown at all, which is good news and hopefully a trend that will continue! The doctor said that his head looks pretty much like another baby he had delivered a month or two ago and they had to take him at 35 weeks, so that's what we're counting on right now.



We also got some really good news. We sent in some amniotic fluid to get Jake's chromosomes tested to make sure his hydrocephalus isn't genetic- on the x-chromosome. This genetic hydrocephalus would mean that if we had another boy there would be a 50/50 chance of recurrance, and also it tends to carry other things along with it such as severe mental retardation and physical impairment. We got the results back and they are negative!! We are so grateful and so blessed that every test has come back normal and as far as we know the hydrocephalus is the only problem. Many times Hydrocephalus goes along with other birth defects but so far, we have found none in our baby. We know that this is a huge blessing and also that it may not be so if it weren't for all the faith and prayers we've been receiving from friends and family. Thank you all so much. The ultrasound does show that the fluid is pushing his brain out toward his skull (which happens in all hydrocephalus babies but on different levels) and Jake's brain in some spots is very very thin, almost non-existent. Hopefully once he's born and the fluid is drained we will be able to see miracles happen with his brain development. But his heart rate is normal, his movement is great, and everything else seems to indicate a healthy baby. We're confident he'll be a fighter.

The neurologist said we can expect cognitive delays and also possibly problems with motor development. We love our neurologist and neurosurgeon. Both said to stay positive because they've seen worse cases of hydrocephalus turn out just fine. They are positive and kind and calm, and they give us hope. We're so grateful! The neurosurgeon, Dr. Whitehead, is someone who we're REALLY excited about. I had researched him a lot before we met with him and I was ecstatic that we got an appointment because his main focus is hydrocephalus. In fact, he's in a group of doctors from around the country who study this and try to make improvements on treatment. In fact, he said that if our baby's ventricles stay open as wide as they are with the fluid pushing them out that he may be willing to try a surgery that would be an alternative to a shunt, which would be awesome! It's called a Third Ventriculostomy. It's where the doctor goes in and makes a small hole in the brain tissue where it won't hurt brain function but allows the fluid to drain. The only problem is that there's only about a 20% chance of this working for life. But if Jake is in that 20%, right now we feel like that would be a miracle to not need a shunt. The more we learn about shunts the more we realize what a burden they are as much as they are a help. They tend to fail often, get infected, clog, and over or under-drain. Obviously if he has to have a shunt we'll deal with it and pray for the best, but if any of those conditions happen (which they eventually will), he'll need emergency surgery to correct the problem. So we always will have to keep a close eye on him no matter what. Dr. Whitehead is probably one of the only doctors in the United States to even consider doing a Third Ventriculostomy on a baby. In fact, I had read that you couldn't even get one for a baby at all! He seemed optomistic that even if it doesn't work and Jake ends up needing a shunt that it's ok... there may be another chance to try the Third Ventriculostomy again. In fact, his whole attitude was that no matter what happens there is always a reason to hope that something else will work. We absolutely love him! An interesting note: Both doctors said that there's a small chance the hydrocephalus will at least partially correct itself by the time he's born. They said that in a small number of babies this happens, depending on the reason for the blockage. Fingers crossed!

In the meantime, we're trying to get things ready as much as we can. Jake has some really cute clothes to keep him warm and cozy in the hospital, and that's really all we know that we need for him right now because we're not sure if we're going to have to buy him special equipment, or if I'm going to be breast or bottle feeding... all those things are up in the air just depending on how he does. I'm feeling very pregnant now and the aches and pains of pregnancy are really starting to show themselves. I'll be in my 8th month next week and in some ways I'm grateful I probably won't make it to the end. Jake's a big boy because of his head, and I sure do feel it! I think by the time my C-section comes around I'll be ready to have my body back to myself. I can't imagine going to term with him and luckily I most likely won't have to. Plus, I think the most brain damage with hydrocephalus occurs after the 32nd week of pregnancy. Not positive on that, but it's something I read.

We just want to say thank you to everyone because we know we're in your thoughts and prayers and we want you to know that we feel your faith and love even though we're so far away from many of you. Some days are harder than others for me, where I just don't know how I'm going to handle this and if I'm going to have the capacity and strength to take care of this little boy. And then that's when I feel God's love, and I feel the prayers you have been sending our way. Our burdens are made lighter and we can get through the next couple of weeks. We just try to take it a day at a time and just be optimistic about Jake's life. It helps to have optimistic friends, family, and doctors. Thank you all!

If you would like, please visit fetalhydrocephalus.com to see pictures of these special babies and read a little more about the condition. The main reason I've been posting this website is so that I can prepare everyone for the pictures of Jake we're going to post. We feel it's important to not hide his pictures and we want to show him off, but at first it can be shocking to see a hydro baby. The menu on the left of that website has a link to a gallery and you can see what the babies looked like at birth and then as they got older. It also shows the range of outcomes from hydrocephalus, which I think is awesome.

Ok, we'll keep you all posted. I'm planning on bringing my laptop to the hospital too while I'm there so I can post pictures and catch everyone up on how Jake is doing.