Each day gets a little better

Today Eden is only getting tylenol for pain and she seems to be doing pretty good. She is still very calm and needs lots of blankie/mommy snuggling time, but overall she has been showing that she is starting to feel much better. We have been up playing with toys and reading books quite a bit, and I'm starting to see a lot more smiles again.

No matter how much pain or discomfort she is having though, a wagon ride is always such a joyous occasion for her. We have been spending quite a bit of time outside getting some fresh air.


This is the face I get now every time I tell her to smile for the camera...


Eden "smiling" with one of the many rocks we collected along our walk. By the time we get home she has quite a collection in the bottom of her wagon.



Thanks to everyone who left their opinion on what I should do with her hair. I go back and forth with it so that means I'm in no position to do anything with it anytime soon! :) It makes me so sad to think about shaving it all off, but I just don't know yet how to make it look decent with what we've got. So in the meantime we will just go with some cute hats until I make a final decision.

Wednesday I'll be taking Eden back in to the eye doctor to see if the swelling has gone down in her optic nerves. Hopefully we will leave there with some good news and her eyes will be ok. Then Friday we will be back at the neurosurgery clinic to get the staples removed from her head and stomach.

We are also looking at getting the airway surgery back on the schedule. Most likely it's going to be some time in early March, but I'm waiting for a call back from the ENT scheduler before we will know for sure.

And then, for something fun that has absolutely nothing to do with the medical part of our lives, we are also hoping to take a trip out to California sometime really soon before Brad's parents move to Tennessee. The timing of everything makes it so tough, but we are trying really hard to figure out how to fit it in there somewhere. I'm not looking forward to the drive, but am really excited to be out there again. So it's going to continue to be busy for us, but I guess that's how we roll!

Shunt surgery went well

Everything with the shunt surgery on Thursday went really well. The poor baby has quite a recovery ahead of her, but she has already made such progress.

We got there about 6:30am and around 8:30 they were wheeling her off to the operating room. Prior to taking her away though, one of the doctors brought in a blue permanent marker to mark the right side of her head where she would be getting the shunt. The marker was then left on the bed which was a bad idea because while we were all discussing what was about to go down, Eden found that marker, took off the cap and proceeded to paint her mouth with it.


Immediately after surgery they moved Eden into the Pediatric Intensive Care Unit where we met up with her. Here's what we saw of our beautiful little girl


The first day we kept right on top of getting her morphine as soon as we could. I could definitely tell when the medicine was starting to wear off, but overall she seemed to stay pretty comfortable.

Each day she seems to get a little better. Yesterday she was sitting up and playing a little bit which was so nice to see. Both the IPad and her daddy were huge helps with entertaining her.



The nurse also removed the bandages that were covering both her head and stomach incisions. Each day I have to clean them and put some ointment on them and then we will go back next Friday to get the staples removed.



We were also able to get discharged yesterday so we are now home which has been SO MUCH better! We were all so happy to be in our own beds last night and I know Eden is much more comfortable here. She has attempted to play with toys, and even danced a little bit, but she always quickly comes back to snuggle and rest. I am happy to see though that she is trying to get back to normal. She is such a fighter and a true inspiration to me every day.

Now, after getting all the medical updates out there, I have to ask.... what the heck am I supposed to do about her hair? I'm not going to lie, I'm heartbroken about it and know it's going to be a really long time before it looks decent again. Poor girl. This is going to be interesting for sure. Any suggestions?

Brain Shunt Surgery

January 27th we were supposed to be getting airway reconstructive surgery. Now on that exact day Eden will be getting a brain shunt. Just a short time ago I was so wishing the airway stuff didn't have to happen, now I wish I could just go back to only a few weeks ago when there was no brain issue and the airway surgery meant we were one BIG step closer to being done with any serious surgeries.... ironic how that happens.

I had a good meeting with the nurse practitioner in the neuroscience department and she explained quite a bit more in depth about the shunt. I saw what one actually looks like and had the chance to get lots of questions answered. I can gratefully say I feel a little more calm about it all, even though I am still extremely terrified.

Eden will be the first case of the day which means we will be arriving at the hospital sometime around 6am and she will go into surgery sometime around 8. The first day she will spend in the intensive care unit, and then will be moved to the general pediatric unit. Hopefully we will only be there a couple days, even though the recovery itself will take quite a bit more time.

My heart breaks for her. I know I've said this before, but I feel it as strongly as ever - I just wish so badly that I could trade her places and save her from the pain. I can't imagine there is anything that can make me feel as desperate and out of control as I am when I try to comfort her. I wish I could help her understand that this is all necessary to help her be healthy and strong.

People have asked how I'm doing with all this... well I feel like wearing black most days so that can't be a good sign. You know how there are cartoons with the good angel on one shoulder and the bad devil on the other, both whispering conflicting information into each ear of the poor confused person? That's exactly how I feel except that I have a logical angel and an emotional devil both creating all kinds of confusing thoughts and feelings for me.

Logically I know that this is exactly what Eden needs to be healthy. I know that there are so many success stories with shunts and I pray we will be one of them too. I know that she is young and won't remember any of this. I know we have so much to be grateful for and that we have experienced miracles with Eden's health. I know I have the most amazing family and friends who love us so much and want to do everything possible to support us.

Emotionally though I just want to scream out "enough is enough," it's completely unfair. I can't bear the thought of spending any more sleepless nights in the hospital trying to comfort my baby who is experiencing pain I can't even imagine. I'm overwhelmed and exhausted and feel completely alone. I feel so much love and support from so many people, but nobody really understands how I feel... not even my own husband. Bearing the weight of it all is lonely and emotionally and physically draining. The shunt in and of itself isn't even really the issue, it's just that it's one more major problem to deal with, and unfortunately one that will be forever. With each additional problem that is discovered, it brings back all the original negative emotions from the very beginning that still haven't been overcome. It reopens wounds that still haven't completely healed yet.

I'm not sure why we have to experience all of this, but I do know that it has changed me in a way that nothing else could have. I just have to remember to listen more to my "logical angel" to help me remain the strong mother that Eden needs me to be. Despite how it may sound, overall I am doing okay. Overall I do remain positive and remember all the countless blessings we have. All I have to do is watch Eden as she does everything that a "normal" toddler does and I can't help but feel extreme happiness and gratitude for the blessing it is to be the mother of such an amazing child of God.

It's official, Eden is getting a shunt

Eden and I are here in Denver right now and today we met with the neurosurgeon at Denver Childrens Hospital. The doctor has confirmed that Eden does need a brain shunt. Before about a week ago, the plan was for airway reconstructive surgery on the 27th. Now the airway surgery has been cancelled and she will most likely be getting a brain shunt next week. Such a short time ago I was so anxious and nervous for the airway surgery, but I was so excited to finally be getting it over with. Now who knows when that's going to take place and we have this other huge thing to deal with. Sometimes you just don't understand why things have to be the way they are.... This is definitely one of those times for me. But we have made it through a lot already in her short 19 months of life, I know we will make it through this too.

So we have also decided it would be best to have the shunt placed by the doctor in NM rather than doing it here in Denver. Today the doctor recommended it would be best to do the placement close to home because he said shunts take a lot of maintenance and it would be best to have the same doctor do the surgery and the follow ups. So we will head back home this weekend, Tuesday we will be seen in UNMHs neuroscience clinic for pre op, and then we will find out for sure when she can get in for the surgery. The lady I talked to today said it would most likely be happening next week sometime. Definitely overwhelming.

As of right now we have no idea when the airway stuff will happen. I have now put that on the back burner, and I know some day we will revisit that plan again.

One thing at a time.

The plan.... at least for now

Something I've learned through dealing with Eden's medical problems, plans change quickly around here!

We heard back from the Nuerosurgeon at UNMH and he diagnosed Eden with hydrocephalus. Courtesty of WebMD, here's the quick definition of hydrocephalus: occurs when the delicate balance of CSF production and absorption is disrupted and CSF builds up in the brain. This build-up of CSF causes the brain to swell, and for pressure to increase inside the skull, resulting in nerve damage.

The major problem we face now is that the docs here don't know what has caused this for Eden. Their solution though was to get her in on Monday the 24th to do a brain shunt. I immediately felt it wasn't the right path for us to put her through brain surgery before first exploring other options or at least getting a second opinion.

So the plan now is to leave for Denver today and she will be seen by a nuerosurgeon in Denver tomorrow. I definitely feel more comfortable getting a second opinion before doing the shunt. I feel good about going to Denver because it's a bigger hospital, with a team of nuerosurgeons so hopefully by collaberating together someone will have experience with a case like Eden's. If we still have to go the route of getting a shunt, at least I will know that it was absolutely the only solution.

As far as the airway surgery that was scheduled for the 27th, we are just going to wait and see what happens with the nuero stuff first. It most likely will be rescheduled, but we don't know that for sure yet. So Eden and I are heading out on a somewhat "unknown" adventure. I will do my best to keep the blog updated with the latest!

Nothing much to report at this point

We are back from the hospital and unfortunately there isn't too much to report after today's MRI and lumbar puncture. The results from the lumbar puncture just confirmed that yes, there is excessive pressure in her head, but why? From this MRI they were able to see that there does not appear to be a small blockage in the aqueduct (which is where the brain fluid drains into the spine). So what is causing the pressure? That's the million dollar question at this point.

So we left the hospital again with lots of questions and not a lot of answers. Now we are waiting to hear back from the nuerosurgeons to find out what the next step will be. Most likely, it appears that Eden is going to need a brain shunt to help the drainage so the pressure will be reduced. I hate doing something so drastic before even knowing the cause, but the potential for very major problems is high if we don't do something sooner rather than later. So now we wait to find out what to do next. I have no idea what this means for the previous plan of traveling out to Denver for the airway surgery. At this point I'm taking it one step at a time so we will figure out our next step after we hear from the nuerosurgeons.

Neurology Update

After many phone calls today with several doctors it appears we have a plan at this point to continue the quest to diagnose Eden's head problem. Thursday we will be taking Eden back to the hospital for a second MRI. The first MRI didn't produce any results of an obvious problem, but the doctors decided it would be best to do another one and focus on a specific part of the head where they think there may be a small blockage.

In addition to the MRI they will also be performing a lumbar puncture which is basically an epidural with the extraction of some spinal fluid. Sounds awful.... I'm sure it will be awful. Fortunately though, Eden will be under general anesthesia so at least she won't have to feel the initial pain from the puncture.

I hate the thought of all of this, but I am hopeful that doing these tests will result in getting Eden the treatment that she needs. We will continue to pray for her as she continues to battle her struggling little body!

CT scan and MRI

The year has just begun and already we are getting it started with some medical things to keep us busy. It all began with Eden's annual eye exam on Thursday morning. Fortunately, her vision appears to be good at this point and she doesn't need glasses, but the doctor became very stiff and serious towards the end of the examination. She explained to me that the optic nerves inside both Eden's eyes were extremely swollen which meant that she had some excessive pressure inside her head. Obviously this is not a good thing so she got in touch with Eden's pediatrician immediately and they decided we needed to get a CT scan of Eden's head done.

The whole way home from the appointment that day I couldn't hold the tears back. We just came home from a surgery in Denver, and we are preparing to leave again in less than two weeks for another major surgery. With the news of this head pressure problem, I just didn't feel like I could handle anything more. As hard as I tried not to, my mind just kept getting out of control worrying about the "what ifs" of this problem and what it might mean for everything. After getting over the inital shock of the news, and draining myself of tears, I was able to gain control and realize that we would deal with whatever came and it didn't do any good stressing over something I didn't yet know anything about.

So Friday morning the pediatrician called and said that the earliest they could get Eden in for a CT scan was Tuesday of this coming week and she felt it was crucial enough that we shouldn't wait. So after speaking with the emergency room doctor, they both agreed we should bring Eden back to the ER so they could get her in immediately for the CT scan.

So Friday morning we headed back over to the ER for another very long day. Fortunately the CT scan itself isn't a very long process, so they gave her a muscle relaxing medication and we were able to hold her down long enough for the scan to be completed.

Upon review of the images they determined that the CT scan looked normal and they couldn't see what the problem is that is creating the excessive pressure. So the next step was to do an MRI to get a more detailed look at the brain and head. Unfortunately we weren't able to get the MRI done on the same day, so once again we were admitted to the hospital and were welcomed back to the general pediatric unit where we just were a couple weeks ago.

After a ton of extremely frustrating circumstances and events, the MRI was finally done at around noon yesterday. Again, there wasn't any obvious problems that they could detect from the images. This information brought us both relief and frustration at the same time. It was definitely good news because at least we aren't dealing with a brain tumor or major blockage which would result in immediate surgery. However, it's so frustrating to once again know that there is a problem, but we don't know exactly what the problem is.

At this point they can only make assumptions about what may be happening and they let us know it could possibly be one of the following three scenerios: (1) her body is producing too much fluid and it's not able to absorb it fast enough, (2) the fluid production is normal but her body isn't absorbing as it should, or (3) possibly there is a small blockage somewhere that they just weren't able to detect from the tests. So the plan now is to get in to see a neurologist beginning of next week to determine what other tests need to be completed. At this point we are kind of left hanging and we don't know yet what needs to happen, or how serious this may be. We also don't know yet how, or if, this is going to affect the airway surgery that we have scheduled for Jan. 27th.

All I can say is that I am deeply overwhelmed by the burden of one more medical problem to deal with. Words can't describe the heartache I feel for Eden knowing that she has to go through so much. I feel grateful that it doesn't appear to be something extremely serious, but I also feel very frustrated by the fact that we have something else we need to focus on in addition to the major airway surgery coming up. I know though that we will make it through this and am so grateful for our amazing family and friends who support us.