Tuesday, May 11, 2010

Positive thoughts go a long way!

We are back from Cincinnati with news we were not expecting! Let me start at the beginning of the day...

James drove over 3 in the pouring rain and sat in rush hour traffic to get us there. We were a bit late, but were able to get in for the ultrasound first thing. The tech spent over 45 minutes scanning from head to toe and back again. She commented many times on how cute he was with his little hands in front of his face or how he stuck out his tongue. Cracked me up, all I saw was a white outline that I didn't want to get to attached to in case we received bad news. But she was very sweet. Then a doctor came in to review everything and we were sent on our way to the MRI. 

The nice little lady in MRI asked if I was told how long I would be in the machine...uh no a few minutes? At least an hour she says! And sure enough I was. It was loud, and uncomfortable, but the images we saw from it later were well worth the marginal discomfort. 

Afterwards James and I quickly grabbed some lunch and headed up to the Fetal Care floor of Cincinnati Children's Hospital not knowing what would come next. We met with a genetic counselor who took a family history. When asked if both my parents were living I nearly said yes then broke down and referred the question to James. He took my hand and explained to the lady how fresh the wound was and how she died. Honestly that was the only time I cried all day. 

Finally it was time to meet with the team of Doctors. There were 8 people in the room other than James and I. A fetal surgeon, neonatalogist, pediatric urologist, main doctor guy and various nurses. They were all VERY nice and answered any questions we had. Which wasn't many because we have researched for the last 3 weeks, but it was nice to bounce some things off of them. 

LOL, are you ready for the results yet? MRI shows the lungs look well developed for Baby Ians gestational age (which is 22 weeks tomorrow.) Amniotic fluid is normal 12.3 (Normal is 8-20) The kidney's still looks large, but show no cysts or bright spots that would indicate failure. As for the protein that we were told indicates kidney failure, it doesn't. The level was high, but it a mute point, no big deal. The only problem we are guaranteed of at this point is the bladder. It could be as simple as an oral medication or sometime more intense like cathing the baby daily. We will just have to wait and see. Until he is born we will go for weekly fluid and kidney checks most likely 1 week at my OB and the next at St. Vincent, but that is up to the maternal fetal medicine Dr. 

When Baby Ian is born, we will deliver via c-section around 37 weeks at St. Vincent in Indy. He will have a renal ultrasound the day he is born to check his bladder and kidney. They will monitor how well he pees. And as long as he is a good weight he will have surgery before we leave the hospital to remove the blockage. Best case scenario we are done at that point...he would need to be monitored for life to make sure his kidney's continued to function and be on medicine for his bladder. But it could be as simple as that! 

There are still many possible problems that could arise. His kidney's could become damaged in the next 15 weeks and things would be much different. But at this point we are very optimistic. There is a great chance I will get to bring home my Baby Ian the last week of August! 

Keep the positive thoughts coming!

Sunday, May 9, 2010

Cherish the time you have with them...

This Mother's Day is my 7th as a mom,
My first without my mom,
and most likely my only as a mom of 3 living children.

We are spending the day planting flowers, eating yummy food with family and just not rushing! It seems all to often there is somewhere to be or to many things to do and we don't take the time to cherish the ones we love. Hug your kids, love your mom, and just take some time today to think about what Mother's Day means to you. How would it be different if you weren't able to call your mom to wish her a happy day? Or weren't able to hug all your children? Do it today, no one is promised tomorrow.

"If roses grow in heaven, Lord, pick a bunch for me ~
Place them in my Mother's arms & tell her they're from me ~
Tell her that I love & miss her, & when she turns to smile ~
place a kiss upon her cheek & hold her for a while ~
Because remembering her is easy, I do it everyday ~
There's an ache within my heart that will never go away.
Happy Mother's Day in Heaven"

Friday, May 7, 2010

Scheduled for Cincinnati

Tuesday May 11th James and I will go to the Fetal Care Center in Cincinnati. 

8am Ultrasound
9:30 Register for MRI
10:15 MRI
12pm Genetics
12:30 Nurse consultation
1pm Team Meeting with the doctors who will give us all our results and options

By the end of that day we should have a very good idea of how things will go from that point on in the pregnancy. Keep us in your thoughts.

On a  great note, today is Mother's Day Tea at Lily's school! Dillion and I are getting ready and will head up there in just a little bit. Lily keeps telling me I am going to love it and cry. I imagine she is right :)

(BTW sorry for that last blog being such a downer...But I couldn't sleep and that is how I felt. Can't promise there won't be more like it.)

Thursday, May 6, 2010

Bad news baby

Today as I was driving Dill to the hospital for his renal ultrasound I saw a van in a parking lot for sale. It said "Wheelchair Accessible" on the window. I happened to be on the phone with my sister and she confirmed that it was my mom's van. Dad is trying to sell it is since mom is dead and doesn't need it anymore. I cried most of today. The thought kept coming to me that if she was still here...with a trach and on dialysis at least I could talk to her. I could tell her about Baby Ian and how his doctor called today and told me they won't be putting shunts in. That they are sending us to the Fetal Care Center where most people choose to terminate at this point. 

Mom would rub my head and tell me that life isn't fair. I use to get so angry when she would say that. But the older I get the more I realize how true it is.

Lately Lily has started telling me that it isn't fair when I punish her for something. I respond with "Life isn't fair." Sometimes I try to explain to her that she gets punished more than Dillion because she is older and he doesn't understand. And other times I want to tell her how horrible life is once she gets older. That she should be thankful that she is young, carefree, and doesn't have  a disease like either of her brothers. But I don't, one day to soon she will find out for herself all the things that truly aren't fair in life. Why is it fair that with a 50/50 chance Dillion and I got rickets, but my sister and Lily didn't? How is it fair that my mom died at age 53 after a very hard life, while others in her family will life forever and have to deal with an 1/8 of the sadness and pain that she lived through? Why is it fair that my baby will mostly likely die even though I am a good mom, who tries so hard, does good things, feeds good foods, reads books, teaches them things...and my half sister has 3 healthy children all being raised by other people because she failed them all? Why did James have cancer 3 times? Why is life not fair? 

Wednesday, May 5, 2010

New news 5/5

Today I visited the new pediatrician with Dillion. He is going to be a great fit for our family. Dills liked him, and he normally strongly disliked doctors, nurses, lab technician, people in general.... :)

Then we had a fluid check at St. Vincent. Everything looked about the same, I still somehow have fluid, the bladder was big again meaning the kidney's are still working. However the Doctor had a level back from the bladder tap that he didn't on Monday. It showed elevated proteins, meaning Baby Ian's kidneys are beginning to not work as well. Dr Conners thinks we need the shunts without question to save the kidney's. He is calling Dr Dumbledoor (ok I don't know what his name is exactly...Looking it up now) Dr. Timothy Crombleholme at the Fetal Care Center in Cincinnati, who BTW previously worked at CHOP which is the best place to go for fetal care, but travelling to Philadelphia is a little out of the question right now. Anyway, the hope is that they will set an appointment up for early next week to consult with us about shunts. They REALLY want us to be out of fluid first, but it is just not happening at this time. Which is actually good for the lungs, but bad because they don't want to do the surgery yet which compromises the kidney's. Also I don't remember the word he used, but the kidney's are now showing up with bright spots. Something genic maybe? If anyone knows tell me what the word is and what it means. Driving me nuts. But it was not a good thing.

So tomorrow at 8:30 Dillion goes in for the kidney ultrasound searching for stone's. Hopefully I will hear from Cincinnati and we can get something scheduled. Poor James is worrying so much and asking every doctor he can find if this is getting done fast enough or if there is a way to quicken the process. At this point every moment we waste is a moment that his kidneys are getting worse...Let's go people!

Monday, May 3, 2010

Good News on Baby Ian!!

Good News, Can you believe it? I was floored when the Doctor called me this morning! He said Baby Ian's kidney functions came back good (they are very stingy with numbers up there, so I get word estimates.) At this point the Dr seems very optimistic. He said there will be life long health problems, but he expects a good outcome as long as we can get the shunts put in soon. So ultrasound with AFI (Amniotic fluid index) check on Wednesday and hopefully I will have a tentative date to go to Ohio.

Tomorrow I am meeting with a new pediatrician my nurse cousin recommended. She thinks he will be able to keep good tabs on the boys issues. He currently has a child dialysis patient, so if it comes to that, then I feel like this pedi is who we want to be with.

Here are the pictures from the ultrasound last Wednesday...He looks just like Dillinger!

LoL, St. Vincent also doesn't like to give me full body shots, so here is my representation of how Baby Ian's bladder looked before they drained it last week. A normal sized bladder should be 1/4 of that size.

Keep hoping and praying for more positive results this week :)

Saturday, May 1, 2010

Boys updates

Unfortunatly nothing to report on Baby Tres except, you can now call him Baby Ian :) We are naming him Sebastian Blake and will call him Ian.

I was hoping to get his kidney function results on Friday but no. I will call on Monday and beg for them. My MIL will be coming with us on Wednesday for the fluid check. She says she is going to yell at the Dr's until they do something immediatly. She also called a friend with connections and we are going to get a second opinion at Methodist hospital next week.

As for Dillion we went to his Pediatricain yesterday morning. He says he doesn't think Dill really had a UTI, because the culture they grew came back with bacteria that is found on skin rather than in the bladder. So he think it was a kidney stone. Next Thursday Dillion goes for a renal ultrasound. If that shows stones then I will need to talk to his ricket doctors about changing his medicine dose because they cause kidney stones in high doses.