"In The Here After"

"Joseph Smith declared that the mother who laid down her little child, being deprived of the privilege, the joy, and the satisfaction of bringing it up to manhood or womanhood in this world, would, after the resurrection, have all the joy, satisfaction and pleasure, and even more than it would have been possible to have had in mortality, in seeing her child grow to the full measure of the stature of its spirit ... when the mother is deprived of the pleasure and joy of rearing her babe to manhood or to womanhood in this life, through the hand of death, that privilege will be renewed to her hereafter, and she will enjoy it to a fuller fruition than it would be possible for her to do here. When she does it there, it will be with the certain knowledge that the results will be without failure, whereas here, the results are unknown until after we have passed the test."

-Joseph F. Smith, Gospel Doctrine

"Home"

So, Logan and I have spent the last week spending every day at the hospital with our cute little girl. We tried weaning her oxygen and back up breaths but her CO2 levels sky rocketed. Her poor little body just can't pump enough of it out I guess. So we set a date to take her off her support (that date being today, November 28th), and then spent the week or so before then holding her, taking pictures of her, reading to her, and dressing her in the cute clothes I had been wanting to put her in for so long. We got pictures of her in her little tiny jeans (I didn't even know they made jeans that small!!) with her adorable pink tennis shoes. And the little blue dress from Hilary that was sitting in her diaper back since September, waiting to be her "going home outfit". I guess you could say that the pretty pink dress from Kyle and Alyssa's yard sale actually ended up being her going home outfit. We put her in it to have pictures taken yesterday and today. A non-profit organization at the hospital came and took a whole bunch of really nice professional pictures. Yesterday we had a "family day" and all of our immediate family came up and we got pictures and spent the day with Cadence. Then, today we got pictures of just her, her cute feet, her hands, our hands, me rocking her in my special rocking chair (Thank you so much Janae and Jim for bringing it down for me!) with the quilt that I made for her. It was the rocking chair that my dad got for my mom for mothers day when she brought me home from the hospital. So she rocked her first child/daughter in it and I wanted to be able to rock my first child/daughter in it as well.
          And then, the part that is a bit more sad, we took her off of her oxygen at about 12:30 this afternoon. She had definitely been getting worse over the past few weeks because she didn't last long at all before her saturation levels plummeted. The nurses gave her some medication to make it peaceful for her and we held her there until she was gone. She went home (although not the home I had originally wanted) at 3:09 this afternoon. She was so beautiful even then. It was, however, kinda sad that the only time I really ever got a good long look at her without any tubes or wires stuck all over her was when she was dying. I'm glad she went peacefully and I know she's happy now. Although it was hard to let her go, I know that now she is free from the never ending struggle that she had been dealing with from the day she was born. When we see her again, her brain will be perfect, just like the rest of her already is. No more seizures, no more "episodes",  no more tubes in her nose, no more tubes down her throat, no more needles poking her day and night, and she will actually be able to be herself. I don't think her brain allowed her complete personality to come through the way a normal baby should be able to. Before she was born, she was a happy, wiggly, stubborn little baby and someday we will get to see that side of her again.
              Oh, we did finally get to learn this past week that she has a very beautiful voice. Logan and I heard her cry, just little one breath cries, off and on this week. I'm not sure if it was because she was a bit more responsive in the last week (possibly because she was growing out of her seizure medication dose), or if she was telling us it was time to let her go, or if she just knew we wanted to hear her before she went, or if she was learning from the really loud baby in the bed next to her, but she has the cutest little voice ever.
              Although the last 6 1/2 weeks have been the hardest weeks of my life, they have somehow also been the best (and I know Logan feels the same). Now I guess the next step is to get all of her pictures and put them on here. Thank you everybody for your thoughts, prayers, support, visits and everything else you have done to help. I know that Cadence is where she belongs now and that she is happy. And although I really don't want to have to wait to see her again, I know it will be more than worth it.

What's the next step?

So, we had another conference with the doctors today (If you're not in the mood to be depressed, do not continue reading.) They have decided that her condition, whatever it is, fits into the neurological problem called "epileptic encephalopathy". They had decided this quite a while ago but it still doesn't say much about what the problem actually is. Still just some really rare brain problem that nobody knows much about. But now, if you want, you can say that's what "the problem" is. All the tests they're getting back still say everything is normal. However, they are now telling us to start thinking about the possibility, or probability, that she's not going to live. Every time she has an "episode" her respiration levels drop which in turn make her saturation levels drop. So they have to keep her on oxygen. Not a problem, lots of babies go home on oxygen. The problem is though, that she has to be on enough medication to "kind of" make the seizure type part of her episodes less severe but in order to do that the medication knocks her out enough that she has a harder time breathing on her own and they don't think they can find a happy medium enough to get her down to a little nasal cannula so we can take her home. So they have now left us with the decision of when to take her off the oxygen, or how fast or slow to wean her onto a nasal cannula, or whatever. The part that doesn't make sense to me is that she was on MORE medication than this a few weeks ago when she WAS just on a nasal cannula and she was doing fine (we should have just taken her home then.) So now I don't know what to think. Is it better for me to look at this little fact and keep hoping that she will do fine on a nasal cannula again? Or is that false hope and I just need to give in and decide that she is going to die? Or is doing that just like completely giving up on her? And if so, is that the right thing to do? Who knows. Right now my brain is just so tired and completely spinning. I have no idea how to think or feel. All I know is that I absolutely CANNOT bare to watch my child die and then have to look at her tiny perfect body laying in a casket. Oh, and then there is the worry of, where would we even bury her?! I have no idea where Logan and I are going to end up as life goes on! If this is going to be the case, I almost wish it wouldn't. Oh, and apparently Logan and I will also be seeing a genetic counselor to find out if it's even a good idea for us to have other kids. Obviously I want other kids!(It seems dumb to have to say "well I've been pregnant twice, given birth once, and have no living children!) But right now I just want to be able to keep the one I've got! What am I even supposed to think of all of this?! I just want my baby to be okay.

A new way of looking at things

So that was about a week and a half ago, and despite what others might say, I have chosen to look on the bright side (and I am NOT just living in denial), realizing that THEY REALLY DON'T KNOW. That was worse case scenario and statistics for a really broad category of the unknown. Most of the babies in that category (if not all of them) probably have completely different problems and so it's still not a very accurate way to say exactly what will happen with Cadence. And... all of the genetics tests keep coming back normal. The doctors here are really good, they are the top of the line, and they really know they're stuff. But the brain is something that NOBODY really knows much about and ultimately God has the biggest say in things, not the doctors. That cute little baby has more prayers and fasting for her than I ever thought possible (thanks to everybody!) and, whether it's just me or whether it's the spirit, I really feel like things are going to turn out okay. I also know that my biggest calling in life is to be a good wife and a good mother (with multiple CHILDREN) so whether we have more of  (hopefully) our own children, or whether we end up adopting more, I guess things will end up okay...some day.

Catching up to Now

So... the Neurology Department got involved since we were seeing seizures. They did 3 EEGs and an MRI. The first EEG they saw definite seizure activity and the MRI showed a little bit of brain damage in the top of her parietal lobe (possibly caused by oxygen deprivation) but no bleeding. They then put her on 2 more seizure medications to try and stop the seizures but they appeared to do nothing. Then they tried vitamin B6 which appeared to do nothing. They did all kinds of tests, neurotransmitter tests, metabolic tests, blood tests, urine tests, etc... a lot of them had to be sent somewhere else and we had to wait for weeks for them to come back. In the meantime we tried the meds and waited for them to fix something but the only thing they seemed to do was make her more and more out of it and less and less responsive. all the tests for deficiencies came back normal, but they put her on some more vitamins anyway. Slowly all the tests started coming back, and every single one of them came back normal. Recently the neurotransmitter tests also finally came back, also absolutely normal.Then they decided to get Genetics involved as well and so they started taking genetics tests, all of which have also come back normal. Once again, it's great that things are normal, but something clearly isn't normal! After realizing that the medications usually used on babies weren't working they decided to put her on a continuous EEG at the same time that they put her on a couple of really heavy medications and eventually put her into a pharmaceutical coma to try and "capture" the seizures, get a hold of them, and essentially "jump start" her brain in hopes that when they took her out of the coma they would be gone. Sadly that didn't work either. It was sure hard for Logan and I to see her in that comatose state. They had to put her back on the ventilator because she was so out of it that she couldn't even breathe on her own...at all...and she just looked (I hate to say it)...dead. When they finally took her off the EEG and off the millions of medications, she was still having seizures every 2 minutes just like before. Even on the medications, her movements stopped because she was so sedated but the EEG showed that the seizures were still happening. Oh wait, but then it was at this point that they decided that they weren't seizures... uh... I'm so confused! Then they said, well maybe a little bit of it is seizures but most of it just looks like "abnormal brain activity". So, now our daughter just has abnormal brain activity that nobody knows how to fix. After all of this they decided to put together a "care conference" with us to kind of decide what our next goals should be and answer our questions, etc. That is when they said that they pretty much have no idea what is wrong with her, it could possibly be abnormal brain cells in general or something, but they really have no idea and they've done all the normal tests, they've done all the rare tests, and now they are getting into the "rarer" tests. SO... they have currently stuck her in the broad category of unknown brain problems that they get 2 or 3 of a year. They then gave us the "unknown brain problem statistics" saying that 70% of children like this stay exactly the same as they are right now and have a life expectancy of 3 to 5 years. Or... 30% of them EITHER get better and grow out of them...or they get worse... And then they went on to say something about that there could be a 1 in 4 chance that this is genetic...WHAT?! Are you serious!! How can they say that when they don't even know what is wrong?! I know that they just have to give us the worse case scenario so that we know what could be but seriously?! Needless to say, after the meeting I felt like my whole life had been ruined. It had gone from a one hour nightmare of "she has to be on oxygen for an hour" to "you quite possibly might not be able to have any more kids and you'll probably lose the one you've got in, at most, 5 years!"

Primary Childeren's Medical Center

After the helicopter left and we got a hold of ourselves, we loaded up all of our hospital junk and ran to the house to grab a few things before we headed to Salt Lake. We arrived there at about 4:00 am, thus making 3 nights in a row with pretty much no sleep at all. We couldn't see the baby when we first got there because they were busy doing all kinds of tests, x-rays, echoes and labs on her. So they stuck us in one of their "family rooms" where we could get some sleep (but let me tell you, it was certainly not made for really getting sleep). By the next day they had ruled out the kinked artery, the lung problems, and her infection was almost better. All really good news right? That is what we said then, and it is still good news, but when everything comes back "normal" but things are clearly not "normal" you almost start wishing something would come back horribly wrong, and I certainly wish that if they were going to find something wrong, it would have been at this point in the story. Things get a lot more un-diagnosable, and un-treatable the farther into it you get. At this point in the story they just can't figure out why her saturation levels keep dropping, considering her lungs seem absolutely fine. So they decided to put her on caffeine, to help expand her lungs, even though she was not a preemie and her lungs were expanded fine already, they seemed to be out of other ideas.

note: the doctors still seem to insist that caffeine had nothing to do with this next part of the story, but I still tend to think otherwise.

The day they started her on caffeine, I was holding her, and Logan and I noticed that she was suddenly having extremely rhythmic motions with her face and limbs right before her saturation levels dropped. So Logan started timing this strange discovery and realized that she appeared to be having some strange kind of seizure every 45 seconds, lasting about 45 seconds.

Another side note: When I was young, my dad bought Ruby Red Squirt once (he loved Squirt) and he didn't realize that "Ruby Red" was really just an excuse to put caffeine in Squirt. It caused my seizures to flare up. Which is why I still find it too coincidental that her seizures suddenly decided to flare up right after they put her on caffeine.

When we told them what we were noticing, they took her off caffeine (since she didn't need it anyway) and at the same time, put her on the first of many anti-convulsant drugs. One of these two things seemed to slow her seizures down from every 45 seconds to every 2 minutes, and although there are many things in between (I will post them up here as soon as I can), "every 2 minutes" is where we still are today.

The story from the beginning

  Cadence Aria was born at 5:39am on October 13th. She had to be put on Oxygen as soon as she was born because she was really tired and her lungs were full of fluid, but it was only supposed to be for an hour. They soon decided that she would have to stay in the NICU overnight and  then overnight became two days (They realized that she had a heart murmur and an infection and they thought that she might have a kinked artery behind her heart) and then they started saying that she'd probably have to stay there for even a few days longer and wouldn't be able to come home with us when I was discharged from the hospital. But we only live 4 blocks away from the hospital so even though that sounded really sad I figured it wouldn't be too bad and we'd get through it okay. However, on the night before I was going to be discharged, Logan and I were just drifting off to sleep when the phone in the room rang. We instantly knew that if the phone in the room was ringing, and it was that late at night, there had to be something wrong with the baby. So Logan flew off the couch and picked up the phone and, sure enough, it was from the NICU. They said, "hey are you guys in a position where you could come down here?" Logan said, "I guess we can be, what's wrong?!" "We'll just tell you when you get down here." ...uh oh, what is so bad that they have to wait and tell us in person?! So... Logan loaded me in the wheelchair and we went down to see what was going on.

Oh, side note: my blood pressure had gotten worse since she was born instead of better so they were still watching that and planning on putting me on high blood pressure medication.

When we got to the NICU, we saw a ton of nurses and also our pediatrician (who should have been home in bed) around little Cadence's bed. At this point we started to get really worried...and they told us that she had suddenly gone really rigid, her saturation levels plummeted, and she quit breathing, she was stable again now but they were planning on life flighting her to Primary Childrens and that the helicopter was on its way. Wow! If my blood pressure was high before, it sky rocketed at this point! In fact, after they had strapped the baby into the roll away gurney thing they use to load them into the helicopter, the nurses taking care of me came down and said, "let's check your blood pressure one more time" and, as I would have expected, it was 190/109! For someone who generally has really low blood pressure, that is insane.

Another side note: My mom had been staying in a hotel with my little brothers and was going to take them to visit Aunt Janae and the boys in the morning. Her plans were flip flopped pretty quick. We called her at about midnight and said, "could you take the boys to Janae's and come down here?" In the end, she ended up leaving the boys at the hotel and making Janae go pick them up.

When we walked out to where the helicopter had landed and they let us look in and see her one more time before they took off, I couldn't handle it anymore. I stood on the grass with my mom and bawled my eyes out. I don't think I've ever cried that hard in my life. Nobody should ever have to watch their 2 day old baby be taken away in a helicopter in the middle of the night. My mom and I have both agreed that we will forever be traumatized every time we hear the sound of a helicopter.