Aja Update!

I thought I would post a quick update and let everyone know how Aja is doing.

Since her surgery, Aja has started with her newborn reflexes. She opens and closes her hands and kicks her little legs around. Before she would just kind of sit there and not move too much. She LOVES looking up. She does it all the time. It's kind of like a whole new world for her up there. She is working on her smile too, it's so cute! She has also found her little voice and uses it often! She has been keeping me pretty busy with holding her. I have to hold her CONSTANTLY. Her head circumference has gone down from 41.5 cm to 37.5 cm!! YAY! She looks so good. I don't have any recent pictures uploaded, but will have some posted soon.

A lot of people have asked me if she will have long term effects from this so here you go:

Since she was born with this condition (we are about 90% certain that she had it in utero) the chances of her having a mental disability are 30%. Before the shunt procedure was invented, the chance of death was 54% now it is down to 5%. The chances of mental disability before were 62% and now down to 30%. So the chance of her having a problem are still kind of high. Any shunt revisions she has ups that percentage as well. This has been one of the biggest concerns for us since her diagnosis, but we have really educated ourselves and have some evaluators coming in to start her on physical therapy when she turns 1 month. We are also researching different support groups for us to join so that we can maybe help anyone else that goes through this and to find support for Mitch and me.

So far though, Aja seems pretty much like any newborn. We won't be able to tell if anything is going on with her until she starts reaching her milestones. Either way we are preparing ourselves for whatever outcome she may have.

As for the other kids, they are doing okay with it. The person who seems most affected by this whole thing (besides us and Aja of course) is Cohen. I feel bad that I can't be there more for him as much as I could before. It's been really hard for me to watch him pull himself away from me and start clinging to Mitch. It's great for Mitch, but it breaks my heart. I'm hoping that we can get on some sort of schedule soon (it has all flown out the window with this thing) so that I can go back to doing what I was with him and so he won't feel so left out.

Anyway, I thought you would find that interesting. It's not an easy condition to deal with as it's a wait and see game and any sign of a shunt malfunction means we have to run down to SLC as fast as we can to avoid any more brain damage. It has been really hard on Mitch and me to go through this as we are terrified right now of missing any signs of a shunt malfunction, but we deal with it a day at a time right now and rely on each other a lot.

Hydrocephalus

Definition: is a term derived from the Greek words "hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain". People with this condition have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.

Just typing this out makes me cry. Our sweet little baby girl was just diagnosed with this on Friday, June 20, 2008. Everyone keeps asking me how I knew so I will type you out our "journey".

When Aja was born and they took her to be cleaned and evaluated in the nursery they noticed that she had a bulging fontanelle (soft spot on top of the head). They, and our doctor had told us that it was because it was just a precipitous (fast) labor. We didn't think anything of it as hey, it's the doctor right?? Her head at that time measured 36 cm.

Fast forward to Tuesday when Aja was 4 days old. Her pediatrician asked us to come in and have her checked out. I pointed out that her head was not going down and he said, well it's still measuring 36 cm, just give it time. Okie doke.

Saturday, Aja is 1 week old and I whip out the tape measure that the hospital had given us to keep track on our own and I get a measurement of 39 cm. I was quite surprised, but prayed that maybe I had measured it wrong. Deep down though I knew something was wrong. As time goes on Aja's head is getting bigger and more shiny. She sleeps a lot and I can't understand why my newborn is sleeping more as she gets older rather than being more alert and active. Wednesday, June 18 Mitch and I are at the store and we are talking about Aja and we both notice that her temples are sticking out really, really bad. We get home and I measure her head again, making sure it's in the same spot as before and get a measurment of 41 cm. Mitch says, call the doctor and make an appointment for tomorrow.

Thursday, June 19 I call the doc and get in for our 2 week appointment and head check. The nurse measures and I ask her if 1.5 inch growth is normal. She says she has never seen it so no, it's not normal. Doc comes in and after much talking gets quiet and starts telling me about shunts. He orders an ultrasound for 4 that afternoon. Get the u/s done and come home at 5 and the phone is ringing. It's the doctor and he has told me to call Primary Childrens Medical Center department of Pediatric Neurosurgery. They want to see Aja the very next day. They tell me she has enlarged ventricles and needs to be seen. I call and make the appointment (of course I'm freaking out at this point, I mean neurosurgery??? holy crapp! what is going on with my baby!). It's for Friday at noon. We head to SLC that night. Friday we get to PCMC and meet with the doctor who tells us that she has what is called "sunsetting" of the eyes; so basically she can only look down as the pressure in her brain makes it impossible to look up, the fatigue (she slept a lot!), and her soft spots were spread out. He sent us down for a CT scan and had us come back to the office. He pulls up her scans on the computer and tells us that the dark spots are fluid, the white spots are normal tissue. There was much more black than white. Mitch and I broke down right there. It was bad. 3 of 4 ventricles were filled with fluid and the 4th wasn't in that great of shape. The doctor says they try to avoid surgery, but she needs it, and now. We get admitted at 8 that night.

Saturday morning Aja goes in for surgery at 9. We go into recovery and I break down. My baby is limp and her poor little head looks so angry from where the tube is going. The nurse tells us that with the amount of pressure on Aja's brain that it felt like a constant migraine headache. I break down again because my baby has been in so much pain, yet she has been so good. She hardly cried (or cries even now!)and she never acted like she was in pain. My guilt is running high, but I know that I did the best I could as I'm not an M.D.

Aja has it rough for a few hours, but they measure her head again and it's down to 40 cm already! WOW! We get many visitors that night and lots of support. Aja does so well! She is acting so much more alert, active and she has her newborn reflexes! It's amazing, too, how different her head looks. Her cheeks poke out further than her head! Before all this she had SO many soft spots, but they are slowly closing. Also, the fontanelle at the top reached the middle of her forehead indicating that her facial bones were spreading which could have caused her to require craniofacial surgery, but we caught it in time. That spot is starting to recede to its normal position. She might/will have to go through shunt revisions as they can malfunction requiring her to be seen and treated immediately.

I cry while typing this because she is so strong. She is so amazing that she has gone through this as well as she has. She will require the shunt for the rest of her life and she will have some limitations (as far as contact sports and stuff like that), she may have mental disabilities, but I don't care. She has such a strong, sweet spirit and she is as tough as nails.

This is a picture of 2 different shunt procedures. Aja has the VP shunt. That means ventriculoperitoneal.


This is Aja before. It really shows her temple sticking out and notice how shiny her head is.


This is where the shunt enters her head.


This is where the shunt goes behind her ear.


Here is an after picture of Aja. Notice how her veins aren't as prominent and her head is not as shiny.


I just wanted to thank all our family and friends for the love and support they have shown us in the last few days.

Updated Pictures!

Here are some new pictures of our newest one. She has been so much fun! The kids are really having a ball helping take care of her. Cohen was our biggest concern because he's been my #1 man for so long, but it seems that he is warming up to her a little bit at a time. Today he was helping me pat her back while she was throwing a mini fit. It was really cute. Anessa and Peyton love holding her and love to name all her "tiny" parts: tiny toes, tiny fingers...it's really cute!

I love her little mouth in this pic!









She came out so fast that she now has a bulging fontanelle at the top of her head so her hair is a bit spread out until that goes down. Doc has told us all should be fine.

I got tagged!

I don't really know how this works, but when checking out Tasha's site I noticed she tagged me; so I will answer the same questions that she was answering!

What I was doing 10 years ago:
10 years ago, lets seeee...I was a junior at Woods Cross and causing havoc with everything that I did. That would be the famous Math year. Anna will know what I'm talking about. We had a math teacher names Ms. Jordan who Anna, me, Matt G., and Lindsay basically tortured. She was a real treat. Do I feel bad about it now? Nah, it was way too much fun and has caused a lot of laughs over the years.

Five years ago:
Mitch and I had been married for a year and a half. We had 2 kidlets at that time. We lived in West Jordan in our very first house that we had built. I was working full time and thinking about quitting to go back to school.

1 year ago:
We had lived in Logan for 6 months one year ago. We were starting to do a bit of work on the basement. I was going to school and taking care of the kids. Mitch was just starting on his Masters degree. We had added to our family with the birth of Cohen. He had just turned 1 at that point.

Yesterday:
Yesterday we got up about 9. Aja was up until 2 in the morning; not crying but just being happy awake while I was nodding off on the couch. After getting up I helped Mitch get the kids breakfast. He went for a run and I looked up movie times for him so that he could take the boys to Kung Fu Panda. I nursed Aja about 8 BILLION times. Changed a blow out. Took a nap. Talked to a friend for about an hour and a half. She brought dinner over. Koby came to visit. My friend Melissa came for a visit. Watched the Darjeeling Limited (interesting movie to say the least). Fretted over Aja's bulging fontanelles and googled them (not a good for newborn paranoia). Talked to Anessa and my mom (she had some pretty funny stories to tell). All in all it was a pretty boring day. Today will be warm so I'm going for a walk; I've totally got cabin fever!

5 snacks I enjoy:
Wow..Brownies, yogurt with cottage cheese, strawberries, toast, chocolate chip cookies.

5 favorite books:
Twilight, New Moon, Eclipse, A Woman of Substance, The Other Boleyn Girl. I love reading!

5 places to run:
Running is for people who enjoy pain. I, on the other hand, do NOT enjoy pain. Give me yoga, pilates, and my elliptical anyday!

5 bad habits:
I have way more than 5..Heehee..I procrastinate, I don't turn on the fan when I shower (I like it steamy. Mitch is convinced I'm going to ruin the bathroom), I pick my nails until they bleed, when I get nervous I bit my lips until they bleed, I leave tissues everywhere.

5 pet peeves:
Dirty houses, dishes on the counter, food left out, people who are in a constant competition to say they are better than someone else, people who don't wipe their kids' nose. Blech...

5 favorite TV shows:
Hell's Kitchen and Bones. Other than that TV really sucks.

5 people I would love to meet:
Meh...Noone has really impressed me enough to want to meet them (at least in this lifetime). If anything I would just rather spend my time with family I haven't seen in a long time.

5 people to tag:
Good laws..I don't even know who reads this! Heather Bennett, if you are reading this...You are tagged hunny! There are some people I wish would get a blog *coughcoughANNAcoughcough*...

Wonder Womban versus the Tornado (my birth story)

Friday June 6, 2008 at around noon I started with some contractions. They were painful and crawled up my belly, but this had been going on for weeks so I didn’t really pay any attention to them. As the night progressed, they kept coming instead of going like they usually did. At 6 they went away completely. Oh well I thought and just went on with my night. I wasn’t feeling too great and had some lower back pain, but just attributed that to the pregnancy. At around 11 I told Mitch I wanted to go to bed and he came up from working in the basement and stayed in the front room with the kids for their weekend “camp out”. I went into bed and hung out by myself relaxing and reading a book. At around 11:20 the baby was just wrestling something in there and it really, really hurt! At one point she moved to a position that made it so I could hardly move; so I laid there for about 5 minutes massaging her into a different position. When she moved I was thinking to myself that I just needed to sleep. So I laid down at about 11:45 and went to sleep.
At around 12:10 a.m. I felt a POP! and a big gush. I laid there for a second trying to figure out what was going on and realized OH CRAP! that is my water breaking! So I called out for Mitch and told him. He came running in and grabbed a towel for me so that I could head to the restroom to change. While I was in there I called my dad and mom to let them know that this was happening tonight. At this point Mitch called Liz, our doula, and asked her to come over because we didn’t know what to expect at this point. I wasn’t really contracting and Mitch and I were joking around about the “attitude” of the baby saying things like “I’m 40 weeks now, and ready to come out.” and things like that. At that point, Liz arrived and that is when I started having contractions. They weren’t too bad and I could still talk and do things through them. Koby and Heather arrived a little bit later and that is when the contractions started to progress a bit more. What really surprised me is that they didn’t hurt all up my belly; they just hurt in my back and my lower pelvis. The only position I really found comfortable was hanging over the birth ball and having either Mitch or Liz press down really hard on my sacrum with something warm. I asked Mitch to give me a blessing and he wanted to wait until Koby was there, so they both came into the room and gave me a blessing. It was very nice and I actually just had a mild contraction during that.
About 1:45 my contractions were very, very painful and I was starting to vocalize with them. It was getting a bit harder to concentrate and make myself relax. I started to shake really bad at this point too. Liz had told Mitch that we would be able to tell when I was in transition because I would get really grumpy. We tried a different position during a contraction and I didn’t like it. So I tried crumpling to the floor, but Mitch wouldn’t let me go. He wanted to help me down gently and I finally yelled at him to just let me go! Mitch said that Liz smiled and nodded to him. I had hit it. It was about 2:20 I said we need to head to the hospital, it’s getting really intense. As I was walking to the door I had the sudden urge to throw up and ran to the bathroom. I thought I was done but again, as I was walking to the door, I did and my poor husband caught it and grabbed a towel for me (the beautiful things we see from our spouses LOL). We got in the car and that was a whole other level of pain right there. Since I couldn’t get into comfortable positions and was stuck sitting upright I think that may have progressed things a bit. Man, it hurt. I was moaning really loudly and just writhing in pain. Mitch kept things calm by telling me that I was doing really well and that he was so proud of me and how strong I was. He would then rub my leg and comfort me when I wasn’t in the middle of them. I would say the contractions were coming about 2 minutes apart at this point. He also told me that Liz had told him that I was progressing really fast. It didn’t occur to me until that point that she was worried that I would deliver in the car. Hence her last statement to us (that I didn’t pay attention to really because I was in pain of “if you feel a lot of pressure and the baby is coming, lay on your left side that will slow it down until we hit the hospital). Once we go to the hospital they were coming every minute. It was intense. After what seemed like a long walk/ride (I was in a wheelchair) we hit the L&D floor. They got me in a room right away and started my Hep lock (it took a few tries as I kept having contractions and couldn’t hold still). During this time I was pleading with Mitch for something, who knows. I finally hit the stage of not being able to do it anymore. They checked me and I was a 7. Mitch and Liz kept telling me, after I said I wanted an epidural, that we would talk about it once my contraction was over. I finally looked at the nurses and told them to call the anesthesiologists, I was done. I was having some more very painful contractions and was crawling all over the bed pleading, moaning, crying..You name it. Finally, to help me feel better, they said they were going to prep me for the epidural. So I laid on my side and when I did that my contraction was so painful that they wanted to check me again to “see if it was too late” (not something you want to hear during labor) and I was 7.5 cm dilated. I laid back on my side and it was a COMPLETELY different contraction. Something was coming. I flipped back over on my back and was screaming “something is coming! Something is coming!” So the nurse checked me again and goes Oh! It’s your baby! I will give two different perspectives here Mitch’s and then mine.
Mitch: The nurse checked you and said you were 7.5 cm dilated. It wasn’t 30 seconds later that you were saying something is coming and you flipped over and I saw the top of the baby’s head. I looked up at you and back down and there was her head and her shoulders and then the whole body. It happened in 15 seconds.
Mine: There was absolutely no way I could stop her from coming. That urge to push was SO strong that I had no control over it. I just kept pushing and pushing. It was amazing. Not that I thought it was amazing at that time because it hurt and I was screaming (yes, screaming) at this point. But I watched the nurse gently grab Aja’s head and she just had to ease her out of my body. She then set her on my chest and I was saying over and over that I did it! I was so proud that I did it, and look how beautiful you are!
My doctor walked in 5 minute later. It was an amazing experience. I’m glad that I had her naturally. I’m so thankful that Mitch and Liz were there. They were awesome help and did an amazing job.

Riding My Pony!

A few weeks ago we went to SL to visit family and so that Mitch could go to The Cure concert. My parents had a pony brought in from a friends house so the kids could ride. His name was BullsEye. They had so much fun.

Peyton went first:


I thought Cohen would have a problem and be scared, but he wouldn't get off the pony!




Anessa went last. She had taken riding lessons before and could do it on her own!


Here is Anessa leading Peyton because he wanted another turn. She's so good about trying to agree with him to avoid conflict (most of the time).


And Finally..Here is Cohen's battle wounds. He looks like a druggie, but the kid won't open his eyes for pictures. He got a wee bit too close to my parent's new cat and she swiped him a couple of times. We are pretty lucky that he didn't lose an eye. Some of those scratches got pretty darn close! It doesn't show it that good either, but you get the idea.

Belly Pic

Hopefully this is the last picture I take of this belly. I call it boob belly for a reason. I have an outie belly button and it sticks out like a nipple...Hence the name: Boob Belly

Sigh...My 39.5 week appointment.

So, the doctor was totally wrong about the whole "I'll be surprised to see you here next week" line. Mitch and I laughed about that one on the day to the doc today. As far as things stand, I'm a very roomy 3 cm and 80% effaced. I had her strip my membranes to see if that will get anything started. That was my last resort. After this, I don't know what else to do to get this kid out into the world but wait.

I refuse to get induced. If any of you are interested why, rent or get The Business of Being Born. It's an amazing documentary and very educational about how birth's in the U.S. are handled these days. It really opened up Mitch's eyes. I also let the kids watch it because it shows live births on there and I thought it would be good for them to see what happens during a birth. They were quite fascinated with it and asked questions which I didn't mind answering.

Cross your fingers that I go into labor soon! I'm miserable!

My Castor Oil Story...

No. It didn't make me have a baby. I drank the stuff at around 5 p.m. Sunday (it wasn't so bad, I mixed it with apple juice and it separated and by the time it went down I was mid guzzle!)then we went for a nice little power walk. (As you might not know, I'm 39.5 weeks and this is the longest I have EVER been pregnant. So, out of sheer desparation I asked my sister in law, Tasha, to see how much to take. Then I went online and read a whole bunch of crap about the stuff, and finally decided to take it. I had also been contracting off and on throughout the day, so I figured it might help speed things up. Sorry for the long back story.)ANYWHOOO, after we got back I decided to stay in and make dinner and Mitch went and played with the kids in the backyard. Of course that is when things "got going". It wasn't nearly as bad as I thought it would be. I had the flu back in September that was much, much worse.

At about 8 p.m. I started contracting, but was still able to do stuff so I made sure to move around as much as possible. Around 9 they started hurting, so Mitch took care of the kids until about 9:30 when we put them to bed. After that Mitch and I timed them while we picked out paint and carpet colors. They were 2.5-4 minutes apart and were starting to get serious. At about 1 I decided to lay down. They slowed a bit, but were still very painful, enough where I had to concentrate in my "sleep". I got up again and oh boy, I was crawling on the ground and being very vocal which helped me deal with the pain. Mitch was so tired he slept through that part, but woke to hear me pacing around in the kitchen. He decided to bring out the hospital bag and we packed it together while I bounced on the birth ball. We stayed up until 3 and I was very vocal the whole time. He was literally falling asleep on the couch so I told him to go back to sleep, I would wake him when I needed him. Well, seeing him sleep reminded me how tired I was so I laid down on the couch to get some shut eye. BIG MISTAKE. It stopped my contractions. Completely. I got up at 5 to nothing. I'm so frustrated right now. I don't know what to do. I've had a few contractions this morning, but nothing spectacular and nothing that is getting regular. Why didn't this work for me?