Wednesday, April 30, 2008

Dr Moser update (Ob)

I saw my ob just a bit ago. I am lucky that she is very close to my office. She basically said what I have written in all my blogs that they just don't know! Thankfully someone just admitted it though......."we don't know". She said that Dr Twickler (MRI) thought it was very worrisome, but noted that the brain is not developed yet. She said that in a normal circumstance they wouldn't catch this until the third trimester, and it would be to late to do anything anyway. She said that Dr Twickler is the expert, and if she cannot tell us a definitive answer no one will. So since the two experts were so gloomy, and gave us really nothing but bad news I was happy that Dr Moser was a bit brighter.
I asked her:
1. We are dealing with the most complex organ in the body that dr's just don't know much about: yes
2. How many cases are there where this probably wasn't ever even caught: probably many
3. So it's reasonable to think some of these cases may have had a positive outcome: yes
4. So it's also reasonable to think some of these just didn't have a good outcome: yes
5. Does that mean it was caught sometimes even after birth: yes
6. What was her main concern? The bleed on the brain....she is interested to know what happened

She then went on to say I would be seeing her every other week. I would see Dr Gloom next door for re-scans every 3 weeks. If the ventricles start to increase we will take it from there. Basically we are 2 weeks out from being able to terminate, but at this point I cannot bring myself to do that. I asked her about the possibility of Dandy Walker syndrome, and I didn't understand her response very well. Basically I believe she was saying the baby had a possibility of 2 issues but not 3 and you have to have 3 for the syndrome. So again it's just a wait and see basis. We go see the neurosurgeon tomorrow at 9am.
As far as the kidney she gave me two choices...1. Go to the hospital and she is putting me on Iv's to flush out the kidney. 2. Go home and lay down, take pain meds, and push lots of fluids if it gets worse again go to the hospital. I am currently doing neither and at work drinking a lot of water. I don't really feel like getting up and down, but it's not hurting as bad as it was earlier. Mike and I did talk about the fact this baby may have some serious issues. We also talked about that quality of life if better than quantity, and that if his quality is not good it will really affect Emily too which isn't fair either. So if thing look very bleak over the next 2 weeks we will sadly take the next step I am sure. Although, I have faith that this will still all resolve itself. On the sono today they told us his brain still looked normal (Which means again they wouldn't have caught this without a level 2 sono). They also said he was growing big and moving around a lot. His heart looked great and so did all the amnio fluid. We can only hope that tomorrow shows his ventricles still measure the same. Dr Moser asked us about delivery. We have decided if we make it to that point we will opt for a c-section to prevent any further damage to his brain. She will also deliver at 37 weeks or as soon as his lungs are mature. Oh and here is a new pic........Mike was very proud of this one. Um it's 100% a boy.

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Morning 4/30

Well I go to the dr at 10am. I will try not to make this blog so down. I did however as noted before have the worst issues with this kidney problem yesterday, and last night. I woke up about 4:45 feeling like I had been hit in the back with a bat. Emily was asking what it felt like and when I told her that she replied "Like my softball bat? Not a ball but a bat? that stinks!". I was late getting her to school....which I always feel horrible about. I was just in some serious pain. Anyway, when I walk in to check her into school the front lady looks at me like I am going to get detention for this......THAT LADY SCARES ME! Anyway, on another note I called the school about 4 weeks ago and talked with the counselor. I explained what was going and asked her to talk with Emily to make sure she is doing ok. Granted I talk to Em all the time about things, but sometimes an outside source can get more out of a child that's afraid of hurting their mother. You think she has talked to her? No. So I asked witchypoo at the front desk what was taking so long and she explained the TAKS test. Um........I guess I fail to understand what the counselor is doing with the TAKS test.?!?!? Counseling kids through it....isn't that cheating? Ok, so anyway I guess we will see what dr says about the kidney but right now I will settle for an epidural, and be a very happy camper. I also had very odd dreams last night. I dreamt I was with my grandparents that raised me and we were in California. Mike and I had to get home for my dr appt, but the drive was 16 hours away. I kept asking my grandparents to come with me, but they would explain they were not allowed to. Then I dreamt they told me I needed to terminate the pregnancy and I just couldn't do it. I remember telling the dr I couldn't be responsible for stopping his heartbeat...ugh! Anyway, so I woke up early, and writhed around the bed. Poor Mike finally gave up and got up really early. I love him being there though, and couldn't do all this with out him.
Ok so let's stray from the sad stuff for awhile. One thing that makes me happy lately is watching American Idol. I haven't been into this show since Kelly Clarkson won...yeah yeah I am behind the times. I normally don't watch a lot of tv though, but I have to sit when I get home now and that's about all there is to do. So I have watched every episode this time and I love the people on there. So I kinda feel sorry for these kids though. As much as I love musicals they stuck the poor saps with Andrew Lloyd Weber last week....really? I mean I know we are looking for a huge range of talent, but Phantom of the opera and Evita?? really? Then this week it's Neil Diamond....zzzzzzzzzzzzzzzzzz. So let's see.

Syesha ~ Synosha it's time to go buh bye! I don't even remember what she sang...regardless of the fact she was decent she needs to go

Brooke White - Her second song was very good and she knew it. She has been on my nerves lately, but redeemed herself last night

David Archuletta - Still reminds me of a muppet and I just cannot STAND watching him anymore. He has got to gooooooooooo! He is Clay Aiken 2

Jason Castro - Oh my poor pretty Jason....he bombed last night but I mean it was Neil Diamond. I think Jason has great potential as the next Jack Johnson, but he is not Neil Diamond.

David Cook - This man can sing anytime, anywhere, and any ones songs and sound good. If he doesn't win this competition I am going to rustle up some 16 yrs olds and smash their lil pink phones to bits for over texting for muppet boy. I saw someone compare him to the pic of Scooter and it cracked me up!!!

Ok off to the dr.

Tuesday, April 29, 2008

A good post

A break from the saddness for a sec. Let me just say I love my husband. I am a very lucky girl to have such a wonderful person. He has probably told me how beautiful I am ten times today and is just the best guy. I am writing this while I am listening him crack up to a movie in the background. Believe me it's a nice sound to hear.He also puts up with me looking like poo lately. I don't feel like my pretty self. My hair is always back in a pony, etc. He loves me no matter what though and that is a wonderful feeling.

update from today

Well after posting the long post below I got really down. I still haven't felt the baby move, and I am not sure if I should call the doc or not. I am even more miffed now I had to wait until tomorrow to see her. I understand I am not her only patient, but I also believe if you are going to send a patient to a procedure with a possible bad outcome you should follow up. Anyway, just not feeling good. I don't want to be at work. I wanna win the lottery and I wanna go home today.

** update ~ I feel a little thump so he is there. I feel better now. I will update my blog tomorrow after the doctor's visit. I might take a tent and just camp out at the doctors office. Seems I spend a lot of time there so I might as well be comfy ... ;)

Tuesday April 29

Well I just finished my morning blueberry muffin which seems to be my huge craving in this pregnancy. They are the ones from Tom Thumb with the large sugar crystals on them...mmmmmmm! It's amazing how when you are pregnant if you are craving something in particular it's just simply the best thing you have ever eaten when you take a bite! Sarah has a dr appt (it's not me for a change!) this morning so I am alone. Poor Sarah hears me rant and rave everyday, and listens with sympathy and reassurance. Anyway, last night Em and Mike were horsing around (like they normally do), and Em kept falling down and acting hurt. After telling her to stop they both ignored me and kept playing. Finally, I heard her squeal like she had really been hurt. Mike explained she had fallen back and hit her head on the couch. I was SO MAD! I had told them to stop! I yelled at both of them like you wouldn't believe. "THAT'S ALL I NEED IS ANOTHER BABY GETTING THEIR HEAD HURT!" I roared. Emily's eyes filled with tears .......... ugh bad mommy bad! Em ran off to her room and I ran to the bathroom. Mike just sat there and realized that I had break down for a moment and he apologized. Em came back down with her little hurt head, and I realized she really did hit it and pretty hard. She had a good size knot on her head and I felt terrible. She pretty much sat beside me the rest of the night, and wouldn't leave. Of course I over tended her as well and even sent Mike to the store for some children's motrin. The rest of the night was filled with Emily's crazy cat meowing his brains out because we left him outside. Which we left him outside because he meows his brains out. Well he then figured out if he went and stood at the back of the greenbelt the dogs would go crazy barking at him and thus we get up and open the door. I was thinking of ways I could roast a cat when I realized it was almost time to get up. Mike and I have spent some quality close time together the last two days and it's been nice. I guess we realized we do really need to lean on each other right now. As much as everyone sympathizes it's hard to express how you are truly feeling during a situation like this. Mike knows though......he is bargaining with God just like I am right now. Oh another frustration from yesterday was coming home to the mail. I am beginning to dread the stack of mail sitting on the counter when I get home. It is filled with medical bills that are mounting rapidly. I have good insurance, but it pays 80% and when you have a pregnancy that will easily rack $20-$30k by the time it's over with there is a lot of people wanting money. I will make it work though I always do, but it's still frustrating. I am a little worried today as Jude is not really moving....but I am probably thinking to much into things. We take for granted in our everyday lives that we will never have any issues with our pregnancy. Pregnancy is suppose to be a joyous occasion. We plan on how we will tell our husband, our families, and our friends when we first find out. Then we happily skip to our monthly doctor appointments and look forward to our 3 sonograms. Then we shop for cute clothes, decorate a nursery, dread labor, and hold a sweet baby. I know it's horrible, but Mike and I have both commented how annoying it is to see those women coming out of the doctor's office all happy (shame on us). All the expected joy changes when you realize your 3 sonograms have turned into 30 sonograms, 2 level 2 sono's, and an mri. It also changes when your once a month dctr appointments turn weekly, and when you are afraid to decorate the baby's room, and you wonder about the clothes you have already bought. The sad thing is as human beings we really are naive and think issues like this do not arise as often as they do. I have made friends on support forums with many mothers who are left with good news from a bad appt, bad news from an appt, or even the worst news losing a child. More times than not the baby and the mommy are just fine so when you get pregnant just remember to say an extra thanks for a healthy pregnancy.
On a side note ... I HATE being sick too. I wasn't always like that, see years and years ago when I was so sad and unhappy it seemed like stuff was wrong with me. Now I hate the doctors offices with a passion and avoid it like the plague. I have to be on my death flu bed to finally get dragged into the dctr. So my first few visits with my Ob were a bit strange to me because there were issues. Now let me add I love my Ob's office. My cousin recommended them and they have been great. Granted I was a bit miffed that after my MRI there wasn't anyone to talk to, but that happens I guess. So anyway back to the beginning of the preg. when I went in I had asked her (reluctantly) about some pain on my right side. She told me I had a very large cyst in that area and then sent me for a renal sonogram which is basically pics of your kidneys. I didn't fully understand why I was going, but followed orders. I figured I would just go in and they would do some scans, I would get to see the baby wiggle, and I would go home. I knew there was an issue when the tech said "Um I am going to go get the head radiologist". Now I am not telling you all this to be a huge whine bag...I can deal with my pain I am just establishing a pattern for this pregnancy. Anyway, head dude comes in and says that he sees severe "hydronoprhosis" of the right kidney. I hate it when they talk doctor and don't just tell you what this means. Now make no doubt that I do research items fully and ask a lot of questions. I am not just a dumb blonde that sits there (just a curly blonde ;)), and stares at them blankly... I actually ask for the full diagnosis so I can look it up. My cousin calls me I am an information junkie and I admit to my issue :). Anyway, my understanding is that this means that my right kidney is not functioning properly because my ureter is being compressed by the cyst (so we thought). A few days later we wind up in the ER and I am in massive amounts of pain. I can handle pain people I was in labor with Em for ten hours at home prior to going to the hospital........mostly because I was forced to be by my old incompetent ob but still I was. Anyway, point is I was in serious pain. So it seems the cyst had ruptured thus some of the pain was gone, but guess what? Yep ureter is not 100% not working..........what does that mean? It means it wasn't the cyst cutting it off it was the uterus and the baby. Not good the Ob said because this means the uterus and baby only get larger. Anyway, this hasn't caused me a lot of issues and yesterday on my blog I stated I haven't had any pain. Until this morning and holy crap it hurts like you wouldn't believe!!!!! So I am downing water which dr says will flush open the ureter for a little while and ease the pain. On top of this my platlet count was low, my blood pressure was high, my RBC count was low, etc etc. All things though that have reversed themselves. My blood pressure is again EXCELLENT at 104/67 , my RBC count is back up, and so is my platlet count. So my hope if everything (but the kidney) turned around for me then maybe it will for Jude too. Maybe we were struggling together to fight and infection and we got through it. I can hope ya know! It's strange being at work.... I just picked up a call and for the fifth time already today the called says "how are you today". It's just them being professional, but you want to answer "how do you think?". Actually I am not doing that bad I am being positive, but have learned to write on my blog everyday or all the feelings bottle up. Oh and this blog has a lot of grammatical errors, but I am not here for a grade. I just type as the thoughts flow in my head. I also repeat myself sometimes from day to day. I hope everyone has a great day!

Monday, April 28, 2008

Appointments

Ok so here is how the week will look. Wed I have a 10am appointment with my OB. I asked them for a 4D sonogram. Which basically won't tell us much, but God forbid we do lose Jude I will have nice pics of him. Thursday I have an appt at 9am with a neurosurgeon at Baylor in Grapevine, and then a 3:45pm appt for a re-scan of Jude's ventricles. Lot's of prayers needed for Thursday seeing as if they have enlarged it's a pretty good indication he is heading towards Hydrocephalus and brain damage. See in his case it's not just a simple procedure of installing a shunt if he develops hydrocephalus it's a bad sign. Friday I have another neurosurgeon appt with someone at Cooks Childrens in FT Worth. I wanted 2 opinions unless for some reason I get over to the one in Grapevine Thursday and just love them. Jude has been kicking again today so he is there and thriving for the time being. My Ob's nurse asked "So did the MRI doctor think he would survive or would you lose him" Ummmmmm gees. I know she has to ask, but what a question. I know the chances of Jude surviving look bleak, but let me tell you this. I have had an "instinct" each time I have gone into the dctr before these tests that we were not going to receive good news. This time I feel different. I feel like his vents are going to be the same. I think the brain compensates for the lacking in other areas...it has been shown to. I think he may be ok. I don't know for sure, but I feel like he may. Oh my OB also informed me that all my blood work came back fine. Which means this was not caused by a virus, etc. She also said my platlet level is back up which is a good sign I am getting healthier. Also, my kidney has not been hurting at all. I am pretty much living off Pepcid because this lil booger is giving me a lot of heartburn...ha! I am up, down, sad, happy to feel him kick, a real bi***, etc. So let me apoligize now if I offend anyone by the way I am acting, etc. It also really just stinks getting up and going on with life everyday, but I guess this is how life works. Oh and on a good note my boss has been super nice today about all this. He is really a trooper being supportive.

Monday April 28th

Well it pretty much sucked ass getting up this morning and coming to this office which I call my second home. On the other hand what would I do at home? Sit around thinking, moping, or cleaning? I wouldn't be decorating this baby's room that's for sure. I closed the door on Friday and haven't been back in yet. Anyway, enough of the crappy sad stuff. I am actually pretty damn angry today vs sad. So let's get down to the nitty gritty. Here is what I have done today. This morning about 8am I left a message with my Ob's nurse. I told her that my findings on Friday at the MRI, that I was about to call the level 2 specialist, and will be trying to get in with a pediatric neurosurgeon asap. Mike and I talked for a long time this weekend and it was pretty intense. It was also re-assuring because at the beginning he didn't want to talk about a thing. He pretty much just wanted to be left alone and was very angry. Anyway, our talks ranged from understanding the fact that Jude may get much worse to realizing no one can give us a final answer. Also understanding that the brain works in mysterious ways and may indeed not have anymore trauma. So basically we realized these doctors don't really know what will happen either. So therefore, we decided to start approaching this with the attitude of "we are not terminating so why don't you tell me what you can do for our son". Just to see what they say and see if their attitudes shift. Now let me say that my OB has 100% stood behind the fact that she does NOT want to terminate a healthy child. She has been pushing the fact that Jude looks healthy on her systems, but she admits she isn't the expert. Anyway, I just heard back from the Level 2 specialist. I go for a re-scan there Thursday at 3:45. So there is 1 appt down. I am sure my boss is going to love me this week....ha! K, will post more later.

Ps. The neurosurgeon's office called back and I had to explain several times to his office staff this is an emergency! She finally seemed to catch on. No I cannot wait 3 weeks for you to get me in. You need to put me on hold and go talk to the dctr. Sure enough that worked!


Here is an early sono of Jude on his belly:
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Saturday, April 26, 2008

The day after the fetal MRI

I decided to move this blog from myspace as it may be to personal for some to read. Anyone that truly knows me knows that writing is my therapy. I haven't returned many phone calls yet, but I am sure people knew I would eventually make my way to a computer. So first things first let's start with yesterday. If you don't know already I am very terrified of enclosed Mri machines. I believe that I am a pretty strong woman, but try to stuff me in a small tube and I bite! In fact, the night before the MRI I woke Mike up because I dreamt someone was trying to stuff me up the bank tube at the drive thru at Wells Fargo. Despite how thin I normally am I am not thin pregnant and just fyi will not fit up the bank chute! Anyway, Mike and I are rather used to waiting on tests and doctors. So we waited in the small waiting area to be called back for the MRI. The striking gown they gave me to change into is something I really should have considered for our wedding. Luckily my OB gave me a valium (that I didn't take...I refused), but see if the MRI tech thinks you are on medicine you get called to the back ASAP. They also don't like to make the preggo women waiting so that was in our benefit.
So they got me back to the MRI and even though I was a bit panicked Mike was my rock and patted my head throughout the entire procedure. Afterwards we exited the MRI room and I saw the main doctor reviewing the films and on the phone. "Crap" I muttered to Mike. He asked me why I said that and I explained there was no reason for the dr to be on the phone unless she was calling my OB. He thought I was being negative, but I am just medically educated....I was also right. She came and got us and led us to her private office. Calmly she looked at us and told us that the news was not good and that there was in fact a "very worrisome problem". So I sat there without letting the tears fall and watched her flip through some films. An Mri film is rather difficult to read, but I listened the best I could. I was also ready with questions. Mike on the other hand....was devastated and I could feel the vibe radiating from him. This is his boy, his son, the baby he has wanted so bad. After losing 4 children with his previous b**** ex wife he now faces this. Sometimes you just want to kick fates ass don't you? Anyway, I heard her explanation "The back of the baby's brain is thinning and there are 2 dark spots which looks like their might have been a prior bleed in his brain. " All stuff I can handle, because evidence shows those items can resolve themselves in the third trimester. I was ok until heard "the baby's head is measuring normal, but the back of the brain is measuring 16mm vs 19mm." UGH, not good and I knew this wasn't good. I was also very composed until I saw the doctor tear up. Oh dear....pass the kleenex please. She went on about how we were a great couple and giving news like this is always the hardest thing to do. She then went on to tell us that just a few years ago this NEVER would have been diagnosed. So the baby could have #1 been fine when it was born, #2 had severe issues that would have been caught in the third trimester sonogram which probably would have present itself as hydrocephalus (water on the brain), or #3 been born and had issues when older or immediatley. So she then went on to explain that she is making a diagnosis on an undeveloped brain. Most MRI'S start at 22 weeks and even then are very difficult to determine and Jude is only at 19 weeks almost 20. She also said that he was so active in the MRI that they had to stop to get him to calm down (he didn't like the noise and boy my belly is sore) so that showed significant brain activity which is promising. So how is that for confusing.
 So my thoughts? Who knows. I go back and forth between thinking all will be ok in the end to thinking I just need to accept this pregnancy is not going to happen. Then I also realize that this is not like dealing with the heart. If there is a major malformation of the heart the baby cannot survive. No, we are dealing with the most complex organ in the body. An organ that doctors admit they do not understand fully. There is a man that has lived with severe hydrocephalus for 40 years without issues....he doesn't even have a shunt. This isn't a baby that I have miscarried early (which would also be difficult) this is a baby that is alive, kicking, wiggling, moving, and I can feel him! I am actually one of those women that believes in termination if it is going to be a child that has no quality of life. I wouldn't want to live that way. Then again would I just cast Emily aside if something happened to her? No. She is my life and if I had to quit my job and live off berries to tend to her for the rest of my life I would. So why wouldn't I do the same for this child? He is no different, and he is alive, and is my child! The problem here is we have all this technology that is suppose to help with things like this.....but ours gives no definitive answers. SO what is one to do? People say God will only give you what you can handle. Nah, God wouldn't give someone this. I can tell you that life presents itself in a way that you HAVE to handle the situation. Although, yesterday I was rather close to springing a mental leak. I am a bit better today. We went to Emily's game and I watched her STINK and could tell the poor little thing was affected by it all too. I called her over made her shake shake out her negative thoughts, and then go back in and have fun. As I write this my Em is in her room, and Jude is yet again kicking me hard. I am thinking of the box of baby bedding that arrived at my office yesterday that I have yet been able to open. I left it there in my office and just came home. I am listening to my husband stress, fret, cry, and be very angry. We question the world, question women that don't want their children , question ourselves, and God. All things we should just let go. Although, I can tell you this....and I am not a woman in denial that I knew at each one of these tests that the results were not going to be good. Call it my sixth sense Sarah M says I have (Which scares her). I can also tell you that my gut says with some slight delays I think this baby is going to be ok, but I guess we will see. So I have decided to take my findings to a local pediatric neurologist and get their opinion. We will then take it from there, and decide if we are going to continue or not.
On a side note another thing I wonder is the fact that they never would have caught this on a regular 2D or 4D sonogram. According to my OB baby Jude still looks normal on their systems. They only caught the above issue after my level 2 sono (I am 35). So is that good or bad that technology has come that far? I guess if they can catch an issue before it progresses and treat it then it's good. Although, what says there aren't other children out there that had an issue like this they never even caught without a level 2 and it resolved itself. I guess if the situation progressed it would have only been caught in the 3rd trimester regular sono with the fluid on the brain....hence the reason most MRI'S are after 20 weeks I guess. Just makes a person wonder though....how many things are they catching now a days that resolve themselves without anyone ever knowing? I guess the medical field is sometimes one large question thus doctors are always just working from a hypothesis. I am afraid I will miss my friends tonight at Gina's party, but I wish you all the best. I will post more after each visit on this site.