Surgery Scheduled and Mysteries Solved

Whew, what a week!  I have so much to catch everyone up on! 

First off, I found a grey hair today.  Ah!

Ok, ok, that's not very big news.  At 32, I guess I can expect to find a few grey hairs here and there.  I wasn't very happy, though!

Now for the real news....

On Saturday, Dr. Zuniga, our urologist, gave me a call about Madi and upcoming surgery.  We talked through some questions I had, and we chatted for quite a while.  I always appreciate a doctor who will call you on the weekends and not rush you; it speaks volumes about the kind of doctor they are.  Basically, before I completely commited to surgery for Madi, I wanted to make sure there was no way around it.  I talked to him about a few different procedures and medication and whether or not they would work for her.  He really thinks, for her situation, the vesicostomy or augmentation are what she needs.  He is very conservative with surgeries, so I know that if he is recommending it, it is really needed.  We opted for the vesicostomy for now.  I scheduled her surgery this week for July 1st (Monday).  We will likely only be in the hospital one night, but we shall see.  We will also get her dye study while we are already in the hospital with an IV in place.  I need to order some cloth trainers, but want to see the positioning of the vesicostomy first.  I'm thinking custom waterproof trainers with a "t" absorbency and a high waist-band.  Now to find someone to make them for us without charging a million dollars.....

On Monday PCH called us to schedule Ramya's dye study, and wanted us in that day, so we headed down.  I know I already blogged about the dye study, so I won't repeat that part.  The doctor called me to talk about the study on Wednesday, and answered some of our mysteries for us.  He said he wasn't worried about the urine getting in to the vaginal cavity.  Apparently it's pretty common and not a big deal. Whew!  Sounded crazy and scary to me, so I'm glad he's not worried.  Sadly, the tubing for Ramya's mitroffanof is just all wrong.  He really thinks it's not fixable.  He said he thinks we are going to have to go in and re-do it all :(.  I'm trying so hard not to be angry, but this is the surgery I asked them not to do on her, but couldn't stop because our adoption wasn't finalized yet, so she wasn't officially ours.  She went through all of that for nothing, sat there alone in pain for nothing, because it's all wrong.  Grrrrr....  The momma bear in me wants to fly to India and yell at someone really badly.  I suppose it's not all for nothing, as it did fix her renal reflux, so I am actually thankful for that.  He also thinks she will need the augmentation surgery, and would do both at the same time, but I don't think I'm ready to do something so big, so I think we will wait a bit, as long as he feels it is safe to do so.  He also wants us to see a general surgeon about her MACE surgery that isn't working correctly, so we head there in a few weeks.  The good news is that he feels we can try to take her off of her prophylactic antibiotic.  We are going to try just our more natural methods and see if it's enough to keep UTIs away.  I'll have to do a seperate post one day about all of the natural supplements we use with the girls.  Anyhow, she is officially off of her antibiotic for now... wooo hooo!

We also saw our naturopathic doctor this week, Dr. Vitaro.  We love Dr. Vitaro and I'm glad, after over 4 months of having Ramya home, we were finally able to get in and see him.  Conner informed Dr. Vitaro that he is like a naturopathic doctor, because he tells me to put on my amber necklace for headaches, instead of using Tylenol.  He thinks he may want to be a naturopathic doctor when he grows up.  He's not sure, though, if he wants to do that, be a karate man, or be a stock or bond trader.  Such big decisions ;).  Dr. Vitaro thinks that thyroid testing for Ramya may be a good idea, because of her early breast development (but normal hormone levels) and lack of weight gain over these 4 months.  I had to drop off some paperwork to the pediatrician so I wrote him a note about this and we'll see what he says.  Dr. V also told me how to try and get the wax out of Ramya's ears (the drops the pediatrician told me to get weren't working), so that's my next adventure with her.

Next week we have two plays we are going to, a few play dates, and some doctor's appointments.  Madi also gets a feeding therapy evaluation to make sure that her pickiness is pickiness and not a feeding/muscle issue.  Hopefully we will get some answers there.  That's all for now; please keep our little Madi in your prayers as we prepare for her surgery.  The doctor says it's a simple one, so we are praying for no complications and a fast recovery!

Update on the Neurosurgeon Appoitnment Today

Madi is officially tethered, which I really already knew.  It is not too bad, and it is lower down her back, but it is there.  Dr. Moss said that Madi is kind of in the grey area where she might benifit from a cord release, but at the same time, it may not be a huge necessity.   Our decision was to wait another 4 or so months, check her bladder/reflux again, and see if it has gotten better or worse.  There are basically 5 reasons to de-tether a cord, and Madi only has 1, but it's a big one.  Our goal with her bladder/kidneys is obviously to protect her kidneys.  The tethering may be why her renal reflux worsened.  If the cathing (we do this every 4 hours, so it works out to about 4 times a day) does not help her reflux, we will consider a detethering surgery.  This could be the only surgery she may need, or she could go through it only to tether again.  He did say that the rest of her spine looked good.  There were not "water" pockets up it like some children have.  Overall, things looked really well.  Thank you for keeping Madi in your prayers! 

Oh, another huge answer to prayer.....  Shriners is flying Madi and I down to their Las Angeles center in May to evaluate her.  If they decide that she is eligible for Shriners, they will help with some of her surgeries as well as standers, AFOs, and other items (not wheelchairs, though).  We will fly over on Thursday,  May 13th, stay that night, be evaluated on the 14th, and fly home that evening.  So that we can save money on airline costs, it will just be the two of us (Shriners is paying for my airfare, so our only cost will be hotel and food, but they only pay for one parent.  They offered to pay for David since Madi is still free, but we decided I would just go by myself).  They will also send a van to get us from the airport so we will not need a rental car.  I will stay with Madi in a hotel or, most likely, a Ronald McDonald house.  If they accept her, we can go to the local traveling Shriner's clinic in the future.  They do not have pediatricians at that clinic, though, so we had to go to LA for the initial evaluation.  If anyone is looking for a place to donate to, Shriners is it!  They are amazing!!

It's been a rough week

This week has been a rough week with Madi. To start with, a few weeks ago my grandmother passed away and though we were expecting it, it's always hard to loose someone you love. Shortly after, an 'internet friend's' (someone I met on the internet) baby passed away. She was 9 days old and had spina bifida. She died during a routine surgery to insert a shunt. I met her mother when she contacted me through Madi's blog. She had a sister with spina bifida that died in her 30's after having a bladder-related surgery. The surgery went well but she got an infection that shut down her organs. Now, she was having a baby that would be born with spina bifida. She found my blog and contacted me to ask me some questions about what she should expect. She is a wonderful person and I enjoyed chatting with her as she waited for her angel to be born. This his pretty close to home and is pretty much my worst fear come true. Please keep her family in your prayers.

So at this point in time, I'm a bit emotional because of all of this, which is pretty unlike me (No, I'm not pregnant. If I am, we have a urologist to talk to....), which has not made this week any easier. The fact that this is a terribly busy week, with four doctor's appointments, three therapy sessions, practice for the women's tea at Church, a play, and the women's tea itself, hasn't helped much either.

On Monday we went to Saint Joseph's hospital for some routine tests for Madi. She needed a renal ultrasound and VCUG to see how her bladder and kidneys were functioning. I have been waiting for this VCUG for a long time. Madi has renal reflux where the urine travels back from her bladder in to her urethra on the left had side. It was never severe, only a level 2, and we were hopeful she would outgrow it. In fact, I have been praying very hard that she would. Along with the reflux comes an increased chance of urinary tract infections, and, because of that, they want kids on antibiotics as long as it is happening, and at least for the first year of life. Though I do believe antibiotics are necessary in some cases, I really did not want Madi on them for an entire year. After talking to a naturopathic doctor, we started her on D-Mannose with the hope that it would help. It did wonders...... until I forgot it on vacation and forgot to give it to her when we got back :(. Back to my story.... we went in for the VCUG and I was fully convinced that it would have resolved itself and would no longer be an issue. Unfortunately this was not the case. Not only does Madi still have the reflux, it's actually worse. Not good. To top it all off, her urine was cloudy when they cathed her and sure enough, she has a nasty UTI. It was in the beginning stages so she wasn't showing signs yet. Because of her decreased level of sensitivity she does not fully know something is wrong, which is a blessing and curse all in one. I am thankful it is not painful for her, but it's really hard when she cannot tell me something is wrong with her because she does not know herself. The urologist, Dr. Zuniga, is sending us for another test in a few weeks after her UTI clears up. This test should tell us if her bladder is spasming or not, as well as how much urine it can hold. Depending on the outcome of this test, we may have to start cathing her multiple times a day. To someone with a child who has spina bifida, I know this is no big surprise and no big deal, it is something you do on a daily basis. For me, though, it's heartbreaking. Since before Madi was born my biggest prayer has always been for her bladder to work well enough to not need to be cathed. It's not the cathing in itself but more what it means; more surgeries and more medications (I hoping to get in to a naturopathic urologist so we can bypass most or all of these). First they will want to put her on an antibiotic so she does not get an infection. Then comes the medication to try and increase the amount of urine her bladder will hold. After that we have the medication to keep her dry in between cathing. When she gets older, though, if she does not out grow the reflux, there is a surgery for that. If she does, but we are still cathing, there are surgery options so she can self-cath easier. The more surgeries she has, the more risk she is at for complications, which can always mean one day I do not get to bring my baby home with me. I know I may be jumping ahead of myself, since we do not yet know for sure if she will need to be cathed, but at this point it is a very, very good possibility.

I know that God is in control and I know that He has a plan. I know that I am so fortunate to have my angel here on earth with me. I know whatever is coming our way, we can handle, because He will not give us more than we can. I am trying so hard to remember that right now and not be discouraged. Please keep us all in your prayers, we would not be where we are without them!!


For anyone else who feels discouraged, this is one verse that I call to memory when times are rough:

Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

We love her, but she's not an easy baby!

Conner was not the easiest baby.  His reflux made him miserable until we got it under control.  I wore him in a sling most of the day, kept him upright, co-slept with him, and just did anything I could to make him comfortable.  No matter what we did, he was still in pain for quite a while.  We took him to a Gonstead Chiropractor who adjusted his little back, which helped immensely.  We also took him to a naturopathic doctor who desensitized him to foods he was allergic to and getting through my breastmilk.  Between the two, his reflux cleared up and he was a happy little guy but it took a while.  David and I were convinced that our next baby would be an easy baby.  It seems, though, that poor Madi also has reflux like her brother.  She doesn't nap well during the day, has "wet burps", is constantly choking on her spit-up, and is just having a hard time.  Even in my arms, on my chest, or in a carrier upright, she still does not nap well.  She wants to be asleep and is unhappy when she wakes.  I've tried Mylicon and have Gripe Water on the way.   I want her to be comfortable and it is really hard knowing that no matter what I do, she is still in pain.  We took her to the chiropractor once already and have plans to go again.  She's also seen the naturopathic doctor for NEAT (natural elimination of allergy treatment) testing twice.  I am praying that these two things will help her, just like they did Conner.  Madi's little life is hard enough without these added problems.  I am praying that God will take away her discomfort so she can get the rest she needs.