Saturday, January 30, 2010

Released from Hopkins

Yeah and yippee.  That is the feeling that slowly took over.  It was not an instant cheerleading yeah in the office.  More something that crept in as we got in the road and fully hit as we set down to eat at the cheesecake factory.  Our first meal out at a restaurant in what felt like forever.  Assuming no utis we will need to get a kidney sonogram in 2 years.  The specialist said our doc might go with 1 year which is fine.  Woo-hoo.  

The day did not start with that giddy sense of joy.  In fact, i was super wound up.  I brought a scarf i am making for kevin with me to knit.  I knitted practically the entire drive and large amounts of time during testing.  That coping mechanism can still kick in when needed.  In fact i was so spun i almost wanted to insist that they sedate Tabytha.  Yep hello miss minimal medicator almost asked for drugs.  Kevin held the line and we were able to get shots obviously.  I just could not handle the thought of waiting and another trip.  Thankfully the staff if used to stressed out parents.  Ron the nurse was wonderful.  Very kind and caring.  

Of course that joy got dinged a bit by an acting out teen.  When you have multiple children the good news from one can turn instantly into a challenge from the other.  Something i am not super used to.  It feels someday like the whole parenting thing is completely new to me.  I wonder how that feel if we do it again and i have 2 children under 5 at the same time.  Oddly i am really looking forward to that change.  Like can't wait to do it.  If i make it to july without actively trying it will surprise me a bit.  I am ready to take the hold button off and get things moving along.  But i need to be smart about it and don't need another stressful pregnancy.  
i do know that it is not entirely avoidable, but well i can try to minimize with simple things like waiting at least a year.  At this point i can say i will not wait two to even start trying.

But for now i am enjoying the family God has given me so far.

Wednesday, January 27, 2010

hopkins round two and other random thoughts

Tomorrow we go to John's Hopkins for the dmsa. That is a scan to check for scarring in the kidneys. (I bet i could type better without a squirmy baby in my lap). Since the defect in Tabytha was present inutero we need to check to see if any scarring is present before deciding on a long term treatment plan. I have already decided a large part of it--namely bye-bye bactrum. Since she did not qualify for the study to see if the course of treatment for the last 40 years is effective i decided to discontinue the preventative antibiotic. If you are certain, i have misgivings not sure = nope. Because i know long term use is not good in terms of treating other infections for the rest of her life. i have concerns about other medical affects as well. I mean how do that they not know more on the issue and not even specific to just urinary reflux patients?? Kevin is even onboard with it. I am not sure what is behind this whole change in mindset to even question a doctor, but i like it.

Tomorrow's trip does have me quite nervous. Freaked about sedating my baby, but i know she would never be still for the test. I know some anxiety about that is fueled even further by concern about the results. I really need some good news here.

Otherwise the last 2 weeks have been fairly calm. Kevin has work again. A nice bit, but not all fully settled on. Enough for me to feel good that jan bills will be paid before they are too late and that Feb bills might even get done on time. YEAH!

And i am knitting. I just finished the knitting part of a hat for tabytha, just need to sew up the seems. Next up a scarf for Kevin. AJ has even requested a hat. A hat will require some help from an experienced knitter. The scarf with a knit 2 purl 2 pattern should be pretty easy, got a nice dark yarn from the yarn shop that i think will work really well for it. I have some beautiful, but fine grade yarn coming from etsy. Not sure what I will do with that, something fun i am sure. Of course i am now obsessed with it, or maybe just with looking at all of the beautiful yarn available. So the scarf will be done on circular needles. Woot I will try to start that today and plan on taking it with me to Hopkins tomorrow. Who knows where this will lead. That is an item checked off my list for the year. Sadly my dinning room is still a paper cluttered mess, albeit it one with a lot fewer papers then 40 days ago. That is progress right?

Tuesday, January 12, 2010

Our Journey to Johns Hopkins

Easy drive on both ends, one never knows with a drive that involves the bay bridge. The drive was the easy straight forward part of the drive. Easy park and even lightening quick into the exam room in my opinion. Much quicker then my regular peds office. But then that is not necessarily a bad thing, because my regular doc takes all the time every visit takes. This visit felt very much like ding time is up. Or maybe it does not take long to say we really have no clue,

Oh wait they do have one clue at least. This is a genetically linked disorder. So we have a 40% chance of passing this along to another child. 2 in 5 does not look so bad on paper or monitor as the case may be. Somehow that felt like strike two against doing it again when i first heard it. Strike one is of course a third surgery. just writing that makes me shudder for some reason. Tabytha has a 70% chance of passing it along to her children. Nice happy news and that is truly the only concrete thing that they knew. Oh wait they also know that 80 % of all cases resolve by age 5. some do still clear up after that just not at a significant enough rate to warrant mention-if my kid was the one that resolved naturally at age 7 i would call it very significant! But that is science for you.

Now to what they don't know. They are not sure of the long term effects of antibiotics. Um yeah whatever i know that it can't be good, especially since they don't even know for sure that it prevents the recurrent utis. So they have decided after almost 40 years of this standard treatment to check it out. Largely because moms like me are questioning the effects of long term use and the government is questioning the cost. I mean a 40 year old study from the uk is all they have to go on. Uh hello 40 year old study done by a socialized medicine country. wth? How did that hang on for so long. Way more studies proving vbac is the way to go, yet that is declared a big fat taboo. Medicine makes no sense to me. Maybe the government will question the cost of c-sections and give 2 time losers like me some hope.

They also don't know for sure that they surgery prevents utis. Great so what exactly do we do? I am leaning between two thoughts on this. Surgery is completely off my list unless further tests reveal any serious defects in the kidneys. So my first thought is sign on for the protocol and help have answers for the next generation. The second one is pull her off the antibiotics right now. So for the now at least i am going ahead with what i have been doing 1/2 tsp of bactrum everyday. This option seems to leave the most options right now.

The good news is we are level 2 of 5 and only on one side. According to the specialist pretty impossible to catch on pre-natal ultrasound. That is quite reassuring to me. So we need to back for another procedure referred to shorthand as a dmsa. It has me super freaked out, they need to sedate her. So they can have her lie very still and see how the contrast dye injected in an iv concentrates in her kidneys. Anywhere it does not go is assumed to be a damaged and scarred area. Big fun. The doctor will meet with us right after so we do not need to do another trip there. Well based on the schedule i have tentatively for the 28th it really means appt for test @ 9:15 am with at least an 8:45 am arrival time and an appt with the doc at 1:15 that afternoon. So i guess i will be kicking it all day at Hopkins. I guess we will be buying food out that day.

So i am waiting for that appointment to make my final decision on the antibiotic. I would love for other mothers to get better answers, but medicating for no good reason is so against my nature. For a condition that can affect up to 20% of the population how do we still know so little? Well the 20% is even a guess thanks to a study in Denmark where all children were given a vcug and the defect was noted in 20% of all babies. The actual number for girls is right around 4% of the population who get it discovered. So that means like 95% of people with present no symptoms. I wonder how this links to kidney disorders in adults? Or hypertension?

It is just all so murky and unsure. No matter what it looks like the doc will not do another vcug for 2 years. So somewhere between 2-5 years of just waiting around. UGGh not my mentality at all. It feels like aj all over again. But only a little worse because this time i know that something is wrong. But this does not seem to be on the same boogey man level that the options for aj were. I guess there is hope in that. Maybe she wont be so cruel with this one for me.

Saturday, January 9, 2010

Momma's Joy is 6 months

So for 6 months we get 2 pictures. I realize that eventually the shot will have to not be in the diaper, but for another 6 months i am going with it. What a healthy little chunk. Well weight, height and milestones wise. She is so pushing ahead. Still no teeth, but they are imminent. so on Tuesday January 5, 2010 6 months to the day Tabytha joy weighed 17 pounds was 25 3/4 inches long with a head circumference of 42.5 cm. she was also hitting the major milestones expected. The little bugger is trying to stand on her own. She is trying to sit up, but doing all abs so i wonder where she gets that from. I swear that i regularly see her try a pilates move. I will post about the hopkins visit, just in a separate one. This one can celebrate. The other one can go all dark and twisty.

I do so love her baby piggy toes. So cute. Everyone on Facebook kept commenting on her elbow dimples. Something i did not notice until then and am utterly charmed by. This is so my baby. She has a short time limit with anyone but me. She even has a short time limit when being around me and not held. I have always heard that a baby can not be spoiled for the first 6 months, i really hope that is true. Even daddy has a short time limit if mommy is not around. Last night it was 45 minutes. I was called back to tend to her it became so bad. I felt awful to see her so upset. The upside is that i appear to have made some progress with my knit stitch. Maybe in a few weeks i can try a purl stitch. Not sure if i will take her or not next month. Because daddy is home the second Friday of February. We will see, the ladies missed her.

I am still generally enjoying mommy baby dance. I think her issue is affecting it somewhat. i do generally like having a baby that is all about me. Some days though it would be nice to get a little more time not carrying around 17 pounds. I am pretty much carrying around all of the weight of the pregnancy again. Well the net effect is less because i am currently 9 pounds less then when i started. Still not satisfied with my shape yet. I really need to work on it. I did walk with a new partner yesterday in the snow. That looks like a promising development. Swimming next week with someone who will help with my breathing/face in the water issue.
So we will see.

Tabytha is really moving forward. Can't wait to see what she does in the next month.

Sunday, January 3, 2010

Clear NT Scan

January 2, 2008 we had our first appointment with the perinatologist.  The big fun of a baby over 35.  My gp wrote my refferal for 6 visits.  WE all that was so over the top.  Little did we know how close to using all of them i would come.  The extra joy of going nutty and placenta previa.  Thanks to living on the wilds of the Eastern Shore it meant an hour drive to Annapolis to see the specialists that my ob likes.  The group really is great.  The visit took forever.  Thankfully, not all of my visits were that long.  

The first visit comes with all of the paperwork which had been mailed and dutifully filled out by me.  You arrive early and wait.  Then you meet with a genetic specialist.  They go over risk rates for certain disorders and ask about ethnic backgrounds.  My husband is adopted, so a lot of that we did not know.  Well we had a clue with his 2 healthy daughters.  Oddly seeing it all laid out like that made it somehow more comforting.  Then we get an option to add blood work screening which can further rule things out.  We of course accepted that.  Back to the waiting room.  

You are then called over to the ultrasound side, after some more waiting.  That is where the blood is drawn as well.  The us showed what to me was a remarkable amount of detail of my baby at 12 weeks.  Somehow she has always felt like a baby not a fetus to me.  They take shots at all sorts of different angles.  One she totally looks like some sort of an alien baby.  The test itself is super cool they are counting the folds at the back of the baby's neck.  The test is call neural translucency.  The name is kind of funny and feels a little odd on the tongue.  We passed with flying colors.  The blood work would further rule out downs syndrome and a host of other genetic defects.  I think after all of my clear testing my chance was something like 1 in 60,000.  Funny how with medicine it is never zero.  

Even those numbers did not come with a complete peace.  I was still so strung about how baby would get out.  Hope can be and often is a cruel bitch.

Oddly this was the first contracting check we received that day as well.  So that meant a little shopping and a nice lunch whole over the bridge.  With 13 plus months of wildcatting and almost 3 months this fall of no work i am fatigued with the consultant life.  Well really is going on almost 4 years now.  Paid time off and company healthcare seems like some long ago dream.  Sigh it would be nice. Setting your own schedule is not quite the panacea it seems from the other side.  Thankfully work came at the very tail end of November.  Not quite a full calendar or the full rate yet, but it inspires hope.  We are both at this point ready for full time.  2 weeks paid vacation and a week sick seem like some yummy dream.  Maybe this will be the year.  

I will either blog a lot this week or be rather silent.  I have a 6 month checkup and a trip to the pediatric urologist coming up.  Wish us luck with that.