Wednesday, May 20, 2009

It's Definitely a BOY!!!!

That was the longest ultrasound I've ever had...the tech did a complete anatomy scan, which took 40 minutes, then came back and asked to take a few more pictures, which took another 10 minutes. After that the doctor came in, another 30 minutes of ultrasound, then he wanted to switch rooms/machines so he could look at something more closely, that lasted another 20 minutes. I guess when you have a child with unexplained disabilities people want to make sure they don't miss anything!

Anyway, the doctor couldn't find anything left of the cyst on the brain, which is great. He did however find a calcification in the abdomen, near the liver, but says it's like the cyst...if there are no other anatomical problems (like clenched fists, short femurs etc.) it means nothing. Anyway, for some reason I find it less concerning when it involves the liver and not the brain. And I have a feeling that if everyone had over an hour and a hlf of ultrasound scrutiny performed on their unborn children there would be a lot more "cysts" and "calcifications" found!

He said everything else about this baby looks perfect, and I'm measuring within a day of my due date. All in all it was a very good day!

Tuesday, May 19, 2009

G-Tube is a No-Go....For Now

Today we met with a nurse practitioner and a doctor in the G-tube clinic at Sick Kids Hospital in Toronto. Definitely a worthwhile trip, it was extremely informative and really helped us to get down off the fence and make a decision.

Jason and I have decided that at this time a G-tube would essentially be trading one aspect of Joey's quality of life for another. We honestly thought that G-tube feeding would be easier and faster than what we deal with now. The nurse practitioner and the doctor were both amazing, and they described everything involved from start to finish. Each feeding would require Joey to be kept still and quiet for about 40 minutes to feed him one can (237 ml) of Pediasure. That would likely involve keeping him strapped in a chair for that length of time, at a minimum of 2-3x/day in order to increase his caloric intake from what he currently consumes. 1.5 hours strapped in a chair per day? I think not! The other option was overnight feeds, which would be tricky because of how active Joey is, and would also involve monitoring throughout the night, you can't just hook himup and go to bed. Fiddling with the tube,pump etc. after he falls asleep would disturb his sleep, not to mention ours. One of the most amazing things about this kid is his very solid, regular sleep pattern. Since 15 months old Joey has slept through the night, usually 10 hours, without waking. Do we really want to mess with that?

So after much consideration and discussion we have decided to put off the G-tube...for now. Right now Joey is eating very well, unlike 2 months ago. Things may change, and they now have a file on us and we can change our minds at any time. The doctor was very much in agreement with our decision. He told us that many of the kids that come through their clinic are just black or white in regards to making this decision, and he agrees that Joey is in a grey area. We did talk about a less invasive alternative, which is appetite stimulants. He seemed to know a lot about these medications and will consult with our pediatrican about it further. We may be able to try this the next time Joey's feeding takes a turn for the worst, and maybe it will get him back on track more quickly.

So right now I'm in the hotel Starbucks while Joey and Jason take a little nap. We're staying at the Hyatt downtown Toronto, which is lovely and has just been renovated. We have a great view of the CN Tower from our room on the 15th floor and tonight we're going to be tourists and take Joey up to the top of the tower. Mount Sinai and Sick Kids is about a 25 minute walk from the hotel and the weather is gorgeous, not too hot and not too cold. It's turned out to be a great day, we're really happy we decided to stay in town for the night.

Tomorrow morning at 8:30am is my level 2 ultrasound. I'm hoping that the doctor won't find any trace of the cyst and that we find out if this is a boy or a girl! Right now the baby is hiccuping up a storm, just like his/her older brother did when I was this far along, which is why I'm here typing instead of napping with the family.

Wish us luck tomorrow!

- p, J & J

Thursday, May 14, 2009

Good News, for a Change

Just a quick update...I received a call from the nurse at Mount Sinai with some of my blood test results from last week. My bile acids have gone down to 12.9, which indicates the medication is working somewhat. It's still above normal but lower than the 15 it was measuring a month ago. My other liver function tests are still relatively normal, with the exception of a slightly elevated billirubin (if it gets too high it results in jaundice).

The risk for the baby to have Down Syndrome is 1/34,800 and the risk of Spina Bifida is 1/19,000, both very low risk, these stats are "the best they can get", according to my regular OB, Dr. S., who I saw on Friday. His response to the choroid plexus cyst? "Who cares?" were his exact words. He said that because the rest of the ultrasound was normal, and my Down Syndrome, Spina Bifida and other test numbers are so high, there is no reason to worry. He also said that when he worked at London Health Sciences Centre a number of years ago they wouldn't even mention these cysts on ultrasound reports if no other abnormalities were found, because they are almost always insignificant. He really does have a way of putting things that makes me feel a whole lot better. I'm haven't stopped worrying 100% and probably won't until this baby is born, but I do feel much more confident that this baby is healthy.

This Tuesday is Joey's appointment at Sick Kids in Toronto for the consultation with the G-Tube clinic, and Wednesday morning is my appointment at Mount Sinai for the level 2 ultrasound. We're going to make it a mini family vacation and stay downtown Toronto for the night, go out for dinner and find something fun to do with Joey. Hopefully I'll have great news from both appointments on Wednesday!

- P, J & J

Monday, May 11, 2009

This kid is messing with my head

Joey and I travelled to Vaughan today to a 3D ultrasound place, hoping to determine the sex of this child once and for all. After 20 minutes, one Grande Iced Mocha from Starbucks and 2 Pop Tarts later, this baby would NOT uncross its legs! The tech said her best guess was that it was a boy, but wouldn't commit to anything. She said the cord was a bit in the way, and while she *thought* she caught a glimpse of a penis she just isn't sure. Now keep in mind, this place is not a medical clinic, they do this for a profit, so the last thing they want is to tell someone they have to come back to be sure, since a repeat visit is free, so if she was sure she absolutely would have said so. Here is the picture I got today, which she was very reluctant to give me as she feels it's "misleading":

Joey quite enjoyed the ultrasound, and was very interested in the black and white images on the big TV. When the tech would switch to 3D the colour changed to a more sepia-like tone, and he would lose all interest. As soon as she switched back to 2D he was glued to the screen!

I have a gut feeling this baby is a boy, and have decided that I will decorate the nursery in green, just in case my gut is wrong :) A week from this Wednesday is my level 2 ultrasound with the doctor at Mount Sinai, so hopefully this baby will uncross its legs by then. Of course I''m a bit more concerned about the cyst on its brain, but the issue of its sex has been a nice distraction from the worry.

- P, J & J

Sunday, May 10, 2009

Happy Mother's Day

Nothing new to report. I just wanted to share this article from the LA Times that was posted on a special needs parenting board I frequent. So timely, and all so true.

Happy Mother's Day to everyone!

These moms know true love
Mothers face tough challenges in raising children with disabilities, but there are rewards in the role.

Deedra Williams doesn't need breakfast in bed or a spa massage to celebrate Mother's Day tomorrow. She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities.

They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.

And everyone knew better than to interrupt, criticize or offer advice.

"No one tried to fix it here," explained Williams, a mother of two sons -- a "developmentally typical" 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.

"We can relate to what each one is going through because we're all in the same boat," Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.

"What I took away from this weekend," Williams said, "is acceptance."

And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.

Raising a disabled child requires a sort of hyper- vigilance. "Motherhood amplified," Nina Loh called it, describing life with her 7-year-old twins -- a "typical" daughter and a son with spina bifida, who has had 13 surgeries and may need more. "The stakes are so high. And there's really no end in sight."

Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering "Healing the Mother's Heart" retreats six years ago, to give women a safe place to vent "the anger, the guilt, the joy . . . all the feelings."

Smith's first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to "walk, talk, sit, use his hands or feed himself," she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.

I asked Smith if she felt cheated, robbed of some of the joys of motherhood.

Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, "when I hear my friends talking about what their kids are doing . . . going off to college, getting married."

Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers.

"I never wanted to be different," said Eileen Sunderland, whose 7-year-old son has autism. "I wanted to fit in. . . . But you can't go to lunch with all the moms at preschool. You can't meet them in the park, because you always have a therapy appointment or a doctor visit to get to."

And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you're trying to get your son to stop flapping his hands like wings.

Still, some said their children's diagnosis provided an odd sort of relief -- a validation of a mother's instinct that something was wrong, or a vindication of their parenting.

"I thought I was an inadequate mother," recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. "I wondered 'Why am I so stressed out? Why can't I take my boy to the market?' Other kids sit in the cart and behave. There must be something very wrong with me."

For others, the verdict triggered fear, panic and disbelief.

When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell "was hyperventilating into a paper bag for 10 minutes."

Gosnell had every prenatal test her doctor offered during her pregnancy, "because I did not want a child with a disability," she said. "I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids."

But children can stretch a mother's boundaries.

Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, "Mommy, I want to teach you a magic trick." Tears spilled down Gosnell's cheeks as she shared the story. "Her progress has been so astounding in the last seven months, and everybody agrees it's because I'm home working with her. . . . I've learned about patience and love and how to give myself to someone else."

And about how important a mother is to her child.

I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me -- a "see, it could be worse" reminder to count your blessings this Mother's Day.

But it was their spirit, as much as their stories, that took me down a different path.

The way every description of a child's disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.

The way they never labeled their other children "normal," just "developing typically."

How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter's tattoo and appreciated her sense of humor more. Or focused less on the "C" in statistics class and more on the hard work she put in to earn even that.

These women are not saints or martyrs. But they see gifts where others might see only hardships.

"Write this column for them," Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges. "We're not special," she said. "We're just human beings, doing what we do with love."

Just like every other mother.

Wednesday, May 6, 2009

Gender Confusion, Among Other Things

Lots to update! It seems this blog has temporarily shifted from Lessons from Joey to Complicated Pregnancy Updates.

First off, I had my 19-week anatomy ultrasound on Monday. I told the tech we already knew the sex, so at the end she said it was a boy. WHAT?! We've been planning on a daughter for the past 4 weeks! She told me this before Jason came into the room, so of course he thought we were joking. The tech showed us what is supposedly a scrotum and penis, but to be honest, I just didn't see it. With Joey is was extremely clear, I didn't question it at all because it was so obvious. This time, not so much. And the first tech was so sure it was a girl! So the jury is out for now,thank goodness we haven't gone overboard with the shopping or decorating! Not being able to stand the suspense I've booked a 3D ultrasound next week, so hopefully we'll have it confirmed one way or another :) Boy or girl, we don't care, except for two things...boys are statistically more likely to develop "issues"" like Joey, even my OB says that boys really are the weaker sex in that regard. I did feel a sense of relief when I was told it was a girl, so a bit of panic has now set in. The other thing is a name...we have NONE for a boy! Not one that either of us even kind of likes. This is going to be tough.

Today Jason and I went to Mount Sinai Hospital to meet with a high-risk OB at the Special Pregnancy Program. We had to give all of our history again, which were of course accompanied by the sympathetic looks and obligatory words of condolences. This is often an issue when Joey isn't with us as I think people get a picture in their mind of what a non-verbal, deveopmentally delayed 3-year-old who doesn't yet walk must be like. They don't actually see the happy, smiling, social, sweet, easy-to-please and affectionate little boy that Joey is. I often find myself thinking (if not actually saying) ''it's not as bad as you think!!!''

Anyway, the doctor was fantastic and basically reiterated what my regular OB has already said...yes, I have had multiple complications but none of them, in isolation or in combination, is likely the cause of Joey's disabilities. He, like everyone else, is stumped but feels from our history that everyone has done everything right, ordered the right tests, investigations etc. to determine a correct diagnosis, but it really looks like we're just a part of that 3% of the population who has a disabled child with no explanation. Regardless, he does think that my previous complications warrant being followed by him, and he even feels I should give birth there rather than at our local hospital. I didn't like that idea at first but then I started thinking about how in addition to Mount Sinai there are 3 other world-class hospitals in 2 city blocks (including Sick Kids) so why would I turn down that kind of care???

We reviewed my test results for the cholestasis. A normal reading for bile salts is 4. High is 8. My reading at 10 weeks was 15. They've seen as high as 40 and above, and in his experience there have been little complications as a result. He's happy I've started the medication already and will continue to monitor me closely, along with my regular OB. Today he ordered another blood test to see where my levels are, hoefully they've come down as I've been on the medication now for 3 weeks. I'll call at the end of the week for the results. The doctor is also referring me to another high-risk OB that specializes in liver disorders during pregnancy, for another consult.

And now for the scary news...This doctor, Dr. R, also received the results from Monday's ultrasound while we were there. It shows a choroid plexus cyst on the left side of the brain. Often a soft-marker for Trisomy 18 (babies with Trisomy 18 rarely live past one year, if they make it to birth at all), it can also indicate absolutely nothing and resolve on it's own, a much more likely scenario. According to the rest of the report, they weren't able to get the best anatomy scan because baby wasn't cooperating with his/her positioning, but from what they could see everything else looked normal. That fact, combined with the negative results from my first trimester prenatal screen, certainly lowers the risk that this is Trisomy 18 but doesn't eliminate it. So I go back to this hospital for a high-level U/S performed by a doctor (usually they are performed by a tech) in 2 weeks. I've been told that most often, when this type of cyst is found in in the absence of any other anatomical abnormalities it results in a positive outcome, meaning the cyst resolves before birth and there are no other effects. So I'm hoping if it hasn't actually resolved that it has at least shrunk from the 8.5mm it was measuring on Monday. The Dr. who is performing the ultrasound in 2 weeks is an expert in brain and spinal anatomy, so that's comforting.

So a very eventful few days, filled with more and more stress. I'm trying to keep calm and not worry but that's almost impossible. I just have to keep reminding myself that I have the best possible regular OB, the new high-risk OB, another high-risk OB specializing in liver disorders, an OB that specializes in fetal brain and spinal anatomy scans, my family doctor and my nurse pracitioner. I'm not really sure how many specialists I haven't seen! Dr. R. called me "an interesting connundrum" and seems genuinely concerned, I feel like this baby and I are both in very good hands.

P, J & J