Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 20, 2011

The Second Hit - but this time we had our gloves on :)

We met with the Pediatric Neurosurgeon today. He (or a colleague if he happens to be out of town when Meagan is born) will do Meagan's shunt surgery.  He explained to us the whole procedure, and how it shouldn't take very long. He was "impressed" with Meagan's ultrasound photos - he said they were so extremely clear, that he felt a fetal MRI would not be necessary right now.  He said he would have an MRI and CT Scan done at her birth anyway so he had a better picture of what he was dealing with before taking her to surgery - and if there were any other underlying issues we cannot see in utero.  He gave us the name and number to another Hydro family in the area who he worked with about 2 1/2 years ago or so.  He said Meagan's pictures reminded him alot of their son's pictures, and so we should probably contact them just for a reference point.  Overall he was very nice, explained things medically, and, ya know.. was a brainiac :) He often said "Um, may I put things bluntly to you?..." "YES! Please!" was always my response... I like that much better than the 'tiptoeing' around that usually happens!
He did address the cord blood infusion at Duke.  He of course stated that he is not 'convinced' of it, and it is still experimental and 'unproven'.... he asked what our intentions were, and, I really didn't have an answer at the time.  After hearing his explanation on things, I completely respect his opinion and understand where he is coming from. At the same time, I know families' personal stories that have really and truly seen a difference from reinfused stem cells... sooo, I think it would be wise for Brian and I to take in both sides of information - and move forward with the Duke infusion.  We will go ahead and get Meagan's blood captured at birth and send it off to Duke - when we go may change depending on how bad or well she does - but I think it's at least worth one infusion. Since the research is experimental, who knows if it will really help - however, that is also the very reason we probably should do it.  Stem cells aren't necessarily a "mystery".. but them working for this particular condition is... however with stem cells track record in other things like cancers, I think in years to come we will find when the "proven" research surfaces, infusions for conditions like Hydrocephalus will benefit from doing these practices.  So at this time, we're going to press on, and take in both the advice of our medical doctors here, and the real life experiences of fellow Hydro families with this procedure. This is her brain, which could affect her entire life... so experimental or not, it's worth at least one shot. We can always step back and re-evaluate after that.

We then went back to our Perinatologist.  He did another scan of Meagan.  She was moving all over the place and had her head wedged way down just to make it difficult on the tech to get her to move.  She finally did roll around and let them get some brain pictures.  Her ventricles looked larger than last time..... he said this was expected... he said she will probably have more expansion as we get later into the pregnancy, but it's just something we have to wait and see (as is the journey with Hydro).  I asked him if they were much larger than last time, and he said in his opinion, the fluid was "worse." He said he would like to re-scan in 4 weeks to see what kind of growth we see after a whole month. There is nothing we can do in utero - so there is no 'need' to come back in 2 weeks. He did offer it to me anyway - he said if it would make me feel better, I was welcome to come back in 2, 3, or 4 weeks for a re-scan so I could have the best peace of mind.  I appreciated this, but, because we still have to go see my regular OB in between, I just said 4 weeks was fine.

 The Perinatologist did not take ventricle measurements again today - he said her mid-brain was now splayed (split) and he could not get a good measurement. He did, instead, measure her brain tissue - he also said there is only 9mm of brain tissue left... kind of scary to hear, but, I let it roll off my back - there is nothing I can do now anyway... so hopefully once she's delivered, we keep that sliver of tissue and it gets to re-expand into a big beautiful healthy brain.

 I do have to give our Perinatologist credit though - he DID offer to get us the information on the contacts/doctors at Duke, so I thought that was nice of him - leaving it up to us as to what to do. I didn't see the need to go into the Duke stuff now with him - we are moving forward, and, we'll cross that bridge when we get there. At least he offered to put us in touch and is open to what our plans are ... for what we think will be best for our daughter. (and little does he know, we have already registered with the infusion program - so we will just inform him of this at our next appointment).  We are still very much up in the air as to whether to get the amnio or not - I know it could rule out genetic causes... however... I just don't know if I even see the risk at this point. We are leaning towards just having her tested at birth now - but - I will re-evaluate that at around 30 weeks to see if we change our minds at that point.

In addition to her brain pictures, we did get some more awesome pictures of her face/profile and body.  She is quite a show off ... She was opening and closing her mouth - almost looking like smiling or laughing at times.  She was rolling around, crossing her legs "criss cross applesauce" style over her chest... then she would tilt her head back and put her hands behind her head. She certainly shows the intention to keep up with her big sisters.
Everything else measured right on time (body, abdomen, femur, humerus etc..) and is where she is supposed to be now - 23 weeks and 3 days.  Her head circumference did measure beyond that for the first time -- 24 weeks 6 days.... so a little over a week. Dr. Korotkin said that was pretty normal and likely by the end of the pregnancy he expects that difference will be much larger. I had read that and heard that from other families, so, I wasn't shocked at all.  We'll just see how that goes over time.

I think the biggest lesson from today was - never ever make decisions after meeting with the Perinatologist for the first time and the genetic counselors.  The Neurosurgeon was FULL of information, very medical, methodical, and "told it like it was" without being all gloomy.  He gave us the full picture point blank, which I appreciated. He didn't sugar coat anything... he said this was not going to be a "walk in the park".. however, he also had alot more hope for our daughter than anyone so far. He is the only one who has taken our attitude of "help her" and run with it.  He talked about her like a person - and like she is important and on her way here, so let's make a plan to help her. I appreciated that. Since he is the actual "brain guy," I valued his outlook more than the specialists and counselors at that point. 

I highly recommend for families who get this diagnosis in the future to talk to a Neurosurgeon about your particular case before deciding ANYTHING.  The Specialists are so doom and gloom... the genetic counselors are so termination and excessive testing "happy" .... but the Neurosurgeons just kind of lay it out there.  I think they should really have families see the Specialists, get the scans, and then go straight to the Neurosurgeons for the actual "counseling" .... it is a much clearer picture about what we are heading in to without scaring the living daylights out of us.  I don't think we should even have to talk to the Perinatologists or especially the genetic counselors until after meeting with the surgeons .... we'd be a lot more grounded, and, armed with much better information before hearing all the "doom and gloom" news. Don't get me wrong - we have to be informed of the good, bad AND ugly...but...there is a way to relay such information that is helpful to a family.

Overall, it was a very productive day -- now on to the very famous "hurry up and wait" until we go back in 4 weeks. I'll be pushing 29 weeks by then, so we'll have a better idea of how our third trimester will shape up.

Keep fighting Meagan. We love you.

1 comment:

  1. Been thinking about you all morning. I love the attitude you and Brian have. Many prayers for you.