Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, June 8, 2011


The title of this post is very interesting to me... you will see what I mean towards the end of this entry...

I finally passed out watching TV Sunday night around 11:30pm or close to midnight... I woke up Monday morning... at 3AM... really?  Ugh.... I tried and tried to go back to sleep - and I couldn't. So I went ahead and got up. I did all the dishes.. I cleaned the downstairs.. I showered and got dressed.. I did 2 loads of laundry and also washed and folded clean diapers... I packed the girls bags for the day (they were going with friends while we went to the doctor).

FINALLY it was about 7am - my kids started to stir.. my husband started to make his way to the shower..etc.. and it was a "normal" hour.. and then I realized we still had 6 hours until the appointment. Sigh... we kept busy around the house, gathered our notebook where we had written questions and got the girls ready to go. Around 11am I finally walked my two little ones down to my neighbor's house -- she was nice enough to take them for the day and since she was going to be home, it was easier for my littles to go there so they could just play and nap.  I got back, got the older 2 girls ready to go, and Brian, the 2 older girls and myself hopped in the van.  My good friend was taking them for me to hang out with her kids - so we dropped them at the ice rink to meet her where her daughter had skating,  and we were off. 

I think I threw up the most I ever have all Monday morning long.  I didn't really have anything to throw up - but my body kept getting sick all morning. The nerves were almost unbearable.. my hands were clammy and if my blood pressure had been taken I would have probably been admitted to the hospital immediately.  The drive to Northside Hospital was SO long. I felt like it was taking forever but then we finally arrived.  We walked into the Women's Center and registered, and they sent us down the hallway to the Perinatal Consultant's office.  We checked in - we were a bit early, but, they said they could actually take us back right away, which I was thankful for because I felt like I was going to vomit again.

We walked back down the hallway.. the tech took us to the ultrasound room and I hopped right up on the table. Let's get going, I thought.  She confirmed our basic information with us, asked what our OB had told us, and then started the scan. 

There was baby - perfect as could be. Moving like crazy. Kicking and punching where ever the tech tried to place the probe - baby was not happy we were poking and prodding at her!  The tech walked us through each and every measurement, part of the body, organ, etc.. and then asked if we wanted to know the sex.

Now Brian and I have had almost all surprises - we only found out with one of our daughters just to see what knowing was like. Having experienced the surprise and enjoying that suspense, we really wanted the surprise again for this birth. There is just nothing like that experience - and in hindsight, the one time we had found out, it made delivery dull and unexciting -  we already knew everything about the baby.  However, being that everything was up in the air with this baby, we wanted to know. We wanted to know ahead of time so we could name the baby, and have time to bond with the baby - we had enough unknowns ahead of us on the road this time!
We told the tech "yes" we wanted to know - as soon as she got the perfect angle, I knew right away - and she confirmed - another GIRL! Brian literally DID have his 5-man .. or.. "woman"... basketball team! Something we had joked about after we had our 3rd girl... it seems God also has a great sense of humor :)  We were very excited and so happy she was safe.

The tech left to get the doctor - I knew that we were about to hear rough news.  I had researched fetal hydrocephalus extensively, and while there are wonderful stories of outcomes, I knew initially the medical information would be tough.  The Perinatologist walked in and immediately began to re-scan me.  He showed me all area's of our baby girl's brain, blood flow, fluid flow, etc... Then, his tone of voice changed, and I knew "here we go with the news".... he showed us pictures of our daughter's brain... looking down, we should see mostly grey matter (brain tissue) ... I looked up on the monitor - our daughter's brain was mostly black. pitch  black. I could see the midline, and outlines of her brain/head, but, not much else. He then explained that the black was all fluid - what we should be seeing there is the grey cloudy matter that represents her brain tissue.  Her ventricles had enlarged so much, they had filled with fluid and were putting pressure on her brain. We could see the outline of her skull - and there was a greyish "ribbon" following the skull-line around the inside - he explained that this was where we could see her brain - pushed up against her head by all the fluid. Ugh.

  He explained everything this meant - unknown brain pressure, unknown brain development, and mostly.. unknown brain damage and prognosis. He explained that normal ventricles are 4mm-7mm...with the high end of normal being 10mm. He said her ventricles were 18.9mm and 19.7mm respectively.  He said there is a good chance they will keep expanding as she grows in the womb, producing more pressure on the brain from more fluid gathering, it just depends on the rate of growth and it if slows at all.  He was able to see fluid also gathering in her 3rd ventricle and said from what he can figure, there is an obstruction or a malformation in that area not allowing fluid to drain properly to the 4th ventricle. He confirmed the diagnosis of Fetal Hydrocephalus, and told us in his opinion, it was aqueductal stenosis.  He then put his hand down next to me on the table and looked down at me... and I KNEW exactly what was coming. He asked if we were continuing the pregnancy ...

I expected this question with what I had read on fetal hydrocephalus... but.. still, when asked, it's like a shot in the heart. "Continue the pregnancy?" I thought? Um.. is there really anything else a person should do?? I am pregnant - and according to our thinking... I am pregnant until the child is born no matter the outcome.... not until I kill my child because she COULD have something wrong or COULD not develop properly when born.

I told him - yes, of course we were continuing! She is our daughter and a parent's job is to protect their children, no matter how hard. Not to take the easy way out and "put her down" like she is some pitiful animal.

He was extremely clear on my intentions, which I was glad for, and he continued talking with us. He showed us all the pictures/measurements and explained about her fluid levels. He said they may continue to expand until she is delivered, causing more damage possibly, and of course unknown things.  Next he sent us to talk to the genetic counselor so she could discuss amnio with us..etc.

We went down the hallway to the conference room..the counselor walked in and introduced herself. She mentioned again not continuing the pregnancy - I stated that no, we WERE continuing the pregnancy. So she moved on to talking about having an Amnio.  There are a few genetic causes of fetal hydrocephalus that are genetic - which also have a fatal outcome.  I asked if having the Amnio to determine one of these causes would help our baby in any way ... she said well, it may change your plans for the pregnancy. Again. I said excuse me? She explained that if she had a fatal condition it may change our plans for the course of continuing the pregnancy... Ok, officially at this point, I know she thinks *some* situation she can throw out there would change our mind...unfortunately for her, she doesn't know me :)

 I told her since the Amnio won't tell us anything at this point but if the baby has a  genetic cause to her condition, I want to wait. I don't want the Amnio accidentally causing contractions or pre-term labor just to know the "why" when that doesn't help the baby or us at all. I know the risk of reacting to an Amnio is very small, but, so is the risk for hydrocephalus.. and here we stand.  I have 4 other kids to chase and other obligations and I can't rest as much as I would like to after having an Amnio, so I compromised with myself -- I told her I was not opposed to having one, though.... I would prefer to have it at 30 weeks.  This way we still know if it is a genetic cause before she's born, but, it will be late enough in the pregnancy she would have a chance if she had to be delivered.  I could tell the counselor was not happy with our decision - but - it didn't phase me. Fortunately for my baby, I am working just fine - and this lady was not going to push me around like I was some weak person who didn't know any better. My goal is to do what's best for baby - and for now, it would have to be monitoring with non-invasive testing until she was at a later date in this pregnancy.

We left the meeting with her - and saw the Perinatologist again. I had read online from other Hydro families about cord blood infusion for babies with hydrocephalus.  We asked him about cord blood infusion of stem cells after she was born - he said in our case, he would highly recommend looking in to it.  We asked him a few more questions on our list and then were released to the nurse's office to make an appointment with the Neurosurgeon.  They said he would be contacted soon and call us with an appointment.  They also gave us her ultrasound photos - some to keep,  and some to take to the Neuro when he sees us. 

We walked out of the hospital and back to the car. Whew. Had been a LONG and trying day. Most of the news we heard, I knew was coming. I had done enough research to know - however, it was just exhausting getting it all confirmed and going through the motions of shock, sadness, anger, and almost being constantly on the defense with people to keep our baby.

Brian and I sat in the car and kind of looked at each other... digested alot of what we had heard. We were also starving - we hadn't eaten all day.. my nerves were crazy and had me dry heaving all day so I needed to eat. We decided to stop at Chipotle, (our ultimate comfort food),  get a very late lunch, talk over what we learned, and then get the girls from our friends' houses. 

The funny thing about my title is this. The more and more I thought about our experience that day, the more I saw the grave difference in perspective between us and the medical field 'helping' us with Meagan's case. To their credit, I understand they deal with things like this daily - and probably need to stay detached from it all because I don't know how I'd handle seeing 10+ cases like ours daily.  However, I also think there could be a better balance with being positive without "giving away" too much hope and putting themselves in danger for a lawsuit if things don't go so rosy for the patient.
 I think if the medical professionals were to title this post "D-Day," to them it would mean DoomsDay (dun dun dun... bring out the black cloud and think the worst).
 I would prefer to title it "D-Day" meaning Diagnosis Day. We know the worst - we are prepared for that if it happens, but prefer to think positively and send those good vibes down to our baby girl. Diagnosis Day it is - Ok.. got that.. now what's next to get my little girl here as safely as possible!

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