One Mom's Life Changes; Another's is On Hold

I read a blog entry the other day about a woman in her late 30s who was preparing to give birth to her second child. She already had a precious little girl, just over two years old (as Petite is now) and she was cherishing the idea of her daughter having a sibling. She imagined two children bonding together. Playing house. Having tea parties. Arguing about which game to play. Etc. All the "normal" stuff that one would think about when on the verge of having a second child.

This mom savoured the last moments of their life as a threesome and as day turned into night, she went into labour. When the time was right, she went to the hospital and delivered her second baby. A girl. The baby arrived safely. But the mother knew. She KNEW something wasn't right with her daughter. She knew it long before anyone dared utter the words: The baby has Down Syndrome. Precious nevertheless. Loved nonetheless. Beautiful anyway. However, the fact that the newborn had Down Syndrome quickly changed the mother's imagined scenarios about what the future would now hold for their family of four. And how things would inevitably change for the older daughter.

As I read the blog piece, I shed a river of tears. I had that scare. I was there. I was labelled high risk to have a baby with Down Syndrome. I had the amniocentesis. Obviously Petite does not have Down Syndrome... but it leads me to wonder. What if? What if I were to go through another IVF? What if I were in that position? Do I want to risk it? Do I want to go through all of what that would mean? At my age, I really don't know if I could handle it. I applaud any and all parents who take on the challenges of raising any child who is differently-abled. Absolutely! I just don't know if -I- have it in me to tackle that at my age and at this point in my life.

So if we were to try again, would it be tempting fate? Playing with fire? Just asking for trouble? Would God look down at me and say, "Hey missy, you had your shot! You got what you wanted. Really? You really want more huh?" And then He would proceed to test me to my absolute limits? Would He do that?

Do I really want to find out? I don't know.

I don't know. Would I do that to my family? I don't know. Could I do that to Petite? I don't know. There are pros and cons to everything of course. But at my age, and using IVF, these are things that must be considered.

Either you make a plan to deal with it, try to foresee every twist and turn in the road and what you would do to handle it. Or...

You hope for the best and say, "We'll cross that bridge when/if we come to it."

Or...

You remain immobilized by fear. Wondering if you'll ever take the leap at all.

**********

Yesterday I published a couple of photos that I took. These pics are photos of Petite's rash. The ongoing, never-ending, irritating, nagging problem that it has become is just NOT. GIVING. UP. Ugh.

We're not sure what it is. But I've got to find out. Poor girl. I'm changing her bath wash tonight and we'll see if that helps at all. I may try to get an emergency same-day appointment with the doc tomorrow.

A Post in Points

My brain is scattered this week. So I guess this post will be pretty scattered too. No, I won't apologize for that; it is my blog after all and as such, I get to say what I want here. Deal.

• I'm frustrated with the program that Hubby is doing at school. Well, not with that program specifically, but with the lack of information from Service Canada about Hubby's Employment Insurance claims. Every time he calls for info (and that's been repeatedly during the summer!) he gets a different story. It's maddening. And right now, they've stopped all payments to his account, hus I'm budgeting extremely carefully. Right down to the dollar in fact. And remember, Petite's in daycare so we have to make sure that gets paid of course! That's a must!
  
  
• My right foot is in an aircast. On June 12, I injured my right heel; it was swollen and painful and there was a bump at the back of my heel. After a week, I went to see my GP. She diagnosed bursitis and told me that wearing open-backed shoes would help, physio would help, ice and rest would help and here... take these anti-inflammatory meds for 10 days. A month later, still in pain, I returned to her. She examined me again and said that now, there's an Achilles tendon problem as well. This time, she told me to wear shoes with heels. And here's a different anti-inflammatory but it probably won't do anything if the first one didn't. More rest, get that physio, etc. I sorta shook my head in disbelief. All along, I'm trying to walk and stretch it out, give it some rest (when I can; remember I drive 1 hour to work each way, and need that foot to drive) but the pain is still ever-present. Fast forward: Tuesday past. I went to a walk hobble-in clinic and talked to another doctor. I wanted X-rays to make sure the bone wasn't chipped or fractured. X-rays done the doc beckons me back to a room. "This is a chronic injury. You have a severely compromised and fragile Achilles tendon and now a bone spur." Ugh. He recommended physio, rest, ice, crutches and/or a walking air cast. Rest and ice I can do in spurts at home. Crutches... no. I have a one-year old. Physio... no. (See the above paragraph about my careful budgeting.) An air cast it is. He figures I'll need at least 3 weeks in it to properly rest the tendo and give it the healing time it needs. Not fun.
  
  
• Tomorrow, September 18, 2010 is one to be marked in my family. My sister turns 39 (whoop it up now sis, your time is coming too!) and my parents will celebrate 45 years together. They didn't want to do anything special to celebrate really. I figure my sis and I have five years to plan for the big celebration! Regardless, it's wonderful that they're able to celebrate so many years together. Happy Anniversary Mom and Dad! And Happy 39th Little Sis! I love you all so very much and I wish I could be closer to celebrate with you in person.
  
  
• This morning, on my way to work, a wolf ran across the road in front of me. I don't think it was a coyote; I'm not entirely sure though. I suppose it could have been. I saw it at a point along the backroads that I drive, where the leaves have begun to fall from the trees and the brush isn't quite as thick. The weather has certainly turned colder in the last week or two. We roasted all summer long and now with the change of seasons, my thoughts turn to other things. Cozy sweaters and warm, wool scarves. Thick stews and homemade soups. Thanksgiving on the horizon on October 11 (it's earlier in Canada, because obviously our harvest season is earlier, being further north). Our tradition of going to Saunders Farm with the kids and friends for Halloween. Preparing for my mom and aunt's arrival mid-October. Closing up the pool, which we definitely need to do ASAP. Covering our shrubs and taking in the patio furniture. Getting ready for when the snow flies all around. And then Christmas, and where, oh where are we going to put the Christmas tree this year!!?? Eeek! Petite will have it torn apart! I think I'm going to have to rearrange the living room for the holidays.
  
  
• My thoughts are also with Vee as the thinks about whether she ought to downsize and move to be closer to her family. Given my last post, obviously I understand where she's coming from. As Bea said in Vee's comments, there are lots of types of support, emotional and practical. And sometimes we just need to have physical closeness to the important people in our lives. Oh I hear that loud and clear! I can relate. I hope whatever decision Vee makes, she gets the support that she needs. Obviously she's far from me so I can't help her with that type of support either. But I am definitely thinking of her and I know she'll do whatever is right for her and Bubbaboo.
  
  
• Also thinking of Holly who contacted me by e-mail. She's about 15 weeks along and dealing with a subchorionic bleed and a high risk for Down Syndrome (1:155 I think. Don't quote me.) She was asking me about how I determined I wanted the amniocentesis (my ratio was 1:75 if you remember) and what ratio I, personally, would have been comfortable with. She and her husband are grappling with that question right now and she, like me, is terrified of having the amnio and losing her baby in the process. I can certainly relate. I hope she and her husband make the right decision for them, whatever it might be. And something that helped me is... will knowing the result determine your course of action? That's the one question that kept me going. And holding the pic of Petite in my hand as the procedure was done. Sure I cried all the way through it. But we made it. And I am sure Holly could get through it too. Sending hugs Holly; I'll reply to your last e-mail in a day or so. Promise.
  
  
• And my heart aches for Sprogblogger. Oh, how I cried this morning as I read her post. She is due to have her baby on September 18. And her due date is the same day that her brother will bury his son, her nephew. And she is heartbroken that she cannot be there for her family on the other side of the country right now as they mourn such a terrible loss. The sweet little boy, a mere four years old (and autistic) climbed over a supposedly childproof fence and fell into the backyard swimming pool. Sprogblogger's brother gave his son CPR until paramedics arrived, and the doctors thought he might pull through. Alas... as she writes, "in the end, his little body had just been through too much. They let him go yesterday, surrounded by family and friends, held tight in the arms of his father and mother." I cried and cried. And I am reminded of my own mother's intense fears surrounding the fact that we too have a pool in our backyard. While I do my utmost to protect Petite (obviously), accidents CAN happen. Honestly, I couldn't fathom something like that happening; I don't know if I would get through it. Please God, I'll never have to find out if I would. It does scare me. But I can only do my absolute best to ensure that Petite is safe. Sure it worries me. Maybe after Hubby finishes his education, we'll be living elsewhere anyway. Regardless, today Sprogblogger is mourning the senseless loss of her little nephew. Go show her some love and let her know you care.
  
  
• Irritation is at an all-time high at my office. I won't get into details. Suffice it to say, some people are incompetent. Others are downright rude. And I have to say, some others are engaging in what I would term as harrassment (but you might not). Not cool. Not cool at all. I continue to keep my eyes open for other opportunities, specifically at home. Wouldn't that be nice? Ah, pipe dreams my friends. However, I get my work done and do my day and try to stay away from the D.R.A.M.A. And when needed, I point to the trusty sign on my wall to remind people that "A lack of preparation on your behalf does not constitute an emergency on mine."
  
  
• Early in December, I'd like to go see Great Big Sea. They're coming as part of the tour to promote "Safe Upon The Shore" (thank you to my Aunt B who bought it for us while I was home this summer). Must try to find a babysitter for that if we can swing it to budget in the cost of the tickets.
  
  
• Petite is still loving daycare. We're lucky she enjoys it so much! I need to try to find some waterproof splash pants and such for her. Her jeans and pants are getting damp with the cooler weather because she frequently ends up on her bum! On October 8, our caregiver would like to extend her Thanksgiving weekend and go out of town to watch her older son play hockey. I'll probably take a day off and extend my Thanksgiving weekend too so I can spend it with Petite.
  
  
• And would you believe that my Blogoversary is coming up next week on the 23rd? Four years. For four years I've been blogging about infertility and our personal journey. How things have changed. And yet they stay the same; now I'm wondering if we ought to try for a sibling for Petite. Do we dare?! Eeek. Time will tell.
  

Scattered much? You bet. That's life at the moment I'm afraid. I hope you and yours have a wonderful weekend. Signing off for now.

RAD Results Are In...

Time: approximately 12:30 p.m. My phone at work rings. Before I pick it up, I see it's the children's hospital calling, and likely it's the genetics counsellor. I take a deep breath.

"(department name), this is Gil, bonjour?"
"Hello Gil? This is C from genetics counselling. How are you today?"
I take a deep breath, "I really don't know. You tell me. How am I today?"
"According to what I have in my hand, you're doing just fine." Magical words, if ever I'd heard them.
"Really? Everything is...?"
"Well, can you talk for a moment?"
"Yes, I can. You have the results a little early?"
"Yes, I have your RAD results here and everything is fantastic. Normal sets of chromosomes, and everything looks wonderful. No extra chromosomes, no partials or other immediately visible issues. And chromosomes 13, 18, and 21 look completely normal."
Cue the huge exhaling on my end and a tear or two as I break into a broad smile.
"And what about the sex chromosomes? Normal as well?" I asked.
"Yes, a perfect set of sex chromosomes. You don't want to know the sex, right?"
"No, we don't want to know unless there's a problem and we need to know. So you know the sex then?" I inquired.
"Yes, I have it right here. You're sure?"
"Positive. Thank you. We want it to be a surprise."
"Well, everything is great. I don't expect that you'll need to hear from me again. Of course, the full karotyping results will be available to Dr. B in 2-3 weeks. He'll be in touch then."
"Okay. Fantastic. Is there anything else I need to know?" I asked.
"No, nothing from me. If you need me, you have my card. Good luck. Get some rest and take care of yourself. All is great."
"Thank you so much for calling. I appreciate it."

And now we can breathe a little easier.

Patti, you're absolutely right. I -did- get pregnant on our first IVF. We didn't have to use donor sperm after all. And I should learn not to look a gift horse in the mouth. Thanks for the swift kick in the pants; I think I needed it.

And thank you all for the good wishes and thoughts. It means the world to me and hubby to know that you're out there pulling for us.

Amniocentesis

Yesterday morning at 10:30 I went in for my amniocentesis appointment. And generally, the appointment and procedure went quite well.

I, however, was a total mess.

I have rarely been so afraid in my life. I trembled as I changed into my hospital gown. I wiped tears as I walked into the room and stared at the bed. I was not pleased to hear that the hospital wouldn’t permit us to record anything, nor take photos of what we saw on the monitor. I made it quite clear that I wasn’t happy and their ‘policy’ was a load of bunk. In my hospital gown, I stood at the end of the bed while the ultrasound tech shoved a consent form under my nose and I told her no, I wasn’t going to sign it until I spoke to the doctor doing the amnio. She was obviously pissed and said, “So you don’t want the amnio?” I replied, “Yes, I have to have it” (knowing in my own mind that I had to go through with it, for myself) and she tossed it aside and just looked at me.

I broke down. With my hands on that bed, I said, “I’m absolutely terrified that I’m going to lie down here and get up without a live baby in me.” I was afraid that something had happened to Petit since we’ve last seen an ultrasound or heard a heartbeat. I was terrified that the measurements would be off. I was scared about the needle for the amnio. I shook at the prospect that the needle would hit Petit and do serious damage. I was nothing short of frozen by fear at the thought that the amnio itself would cause a miscarriage. And of course, I trembled at the thought that the tests come out positive. One thing after another all rolled together in my head and I just wept. Big, fat, emotional tears. I think I wept for most of the appointment actually. Either I wept or I held my breath, alternately.

Once we explained some of our fears, our journey and our issues to the ultrasound tech, she SORTA understood. She reassured me, saying, “Okay then. It’s okay. Just lie down then and we’ll take a look at the baby first. One step at a time.” It was all I could do to get on that table. But I needed to see Petit and know.

And my fears were unfounded. Petit is doing well. Heartbeat of 140, moving limbs and twisting now and then for us. The tech took measurements of femurs, arms, head circumference, all sorts of details. And according to her, everything is on track. Petit is doing just fine. I spend every day in fear that something will happen in utero and the DBT just invade my head. How do I get them to go away? How do you banish DBT from your brain? I know all this stress and angst can’t be good for Petit, but what do you DO to make it go away? What do you DO to help yourself get over that? I fear I won’t be able to enjoy one minute of this pregnancy at all. And that sucks because it’s the only pregnancy I’ll likely ever have at all.

Anyway, the ultrasound was finished and we got one picture of Petit that I held onto for the rest of the appointment. As I said, I can’t be sure that it won’t be my last, so I needed that security blanket.

The doctor came in and sought to reassure my fears. I asked about miscarriage rates. I asked about false positives. I asked about the procedure itself and explained my fear of needles, miscarriage, positives and all the rest. He was good. Calm and understanding. He isn’t just a regular OB, he specializes in amniocenteses and that morning, I was the third one he had on his schedule. He does them every Monday to Thursday morning, usually 4 per day. Yesterday they only had 3 scheduled because the woman before me has twins; double the time for the procedure.

So I signed the form and lay back, weeping. The doc slathered my belly with iodine, and then covered my tummy with the necessary drapes. He walked me through every moment. Hubby held my hand all the way (I think he’s lucky that I didn’t break a finger). They pinpointed a spot near the placenta, away from Petit and the ultrasound tech held the probe in place. Of course I couldn’t look at the needle, but I kept my eyes firmly on Petit and the monitor. The needle went in easily enough, with just a pinch or two and some pressure. They went through my abdomen, into the uterus and through the placenta (as apparently that reduces any fluid leakage or possibility of spotting later) into the amniotic fluid. I saw the needle on the monitor and it never even came close to Petit. The doc said I had quite enough fluid to work with and they started pulling out the required amount. Petit was in no danger at all from the needle or lack of fluid from what I could see. And when they had all the fluid they needed, the doc pulled the needle quickly. THAT hurt like a mother!!! Jesus. I almost rose off the table!! Not cool.

The amniotic fluid was completely clear and it’s very light yellow in colour. There was no cross-transference with my own blood so hopefully that bodes well for the Rapid Aneuploidy Detection (RAD) testing that ought to be done this week. We might even get those results by Friday… we hope. After the needle was withdrawn, the ultrasound tech looked at Petit again, and checked the heart rate. All was completely normal and we were free to go. They handed me a washcloth to wipe the iodine and gel from my belly, so that I wouldn’t stain my clothing. Hubby helped me up and made sure I got all the iodine off before I got dressed.

For the rest of the day, I was told that I had to take it easy; no spring cleaning apparently! And for the next week, no heavy lifting, no straining, no sex (!!) and watch for spotting, leakage of amniotic fluid, a fever or severe cramping. No flying in the week post-amnio either; I’m glad my flight isn’t til April 3. We went home, stopping on the way to pick up a couple of movies to watch. Hubby went out for a DQ Blizzard for me and I took a nap before watching the movies and just kicking back at home. I was completely lazy but after the stress of the last four or five days, it was sorely needed.

And now we wait. Hopefully Friday we’ll get the RAD results and then before I go home, we ought to have the full details of the amnio culture. More stress for me. Until I get these results, I live in fear of “What if?” But as one of my blogging friends said to me, it’s important that I give Petit the benefit of the doubt right now and not to prejudge fate. Petit is REAL and deserves the best chance that we can give her/him. And that means, trying to breathe a little easier. I need to reason with myself (somehow!) and just take things one step at a time, and cross the bridges as we come to them.

I’m just tired of bridges and obstacles though. I want and NEED something to go right. For a change.

For your viewing pleasure, this is the picture of Petit that we obtained at yesterday’s appointment.

IPS Results

For the clinically minded, here are the details of our IPS results.

AFP level = 10.9 ug/L (0.54 MoM... low)
uE3 level = 2.47 nmol/L (1.02 MoM... normal)
Total hCG level = 28.7 kiu/L (1.45 MoM... high)
NT measurement = 1.7 mm (1.06 MoM... normal)
PAPP-A level = 0.38 iu/L (0.39 MoM... low)

The low AFP, the high hCG and the low PAPP-A give us the 1:75 risk.

I also know that a higher hCG level is frequently present in women who've undergone IVF.

Additionally, my high TSH (thyroid) levels might throw this out of whack. And I've not yet had the OGTT so any blood sugar problems might throw it out of whack too. I'm still worried for Tuesday and until I get these results back, it's going to be really hard to concentrate on doing anything to prepare for Petit's arrival.

For all I know, Tuesday may be the last day I get to see Petit at all... as there is a chance of miscarriage following an amnio. Before that needle goes in, I am going to have a photo of our baby in my hands; it may be the last one I get.

Four Days of Hell to Get Through

Hubby and I managed to get an appointment this afternoon for a session with a genetics counsellor. We have an update as well; instead of 1:50, our chances are 1:75 (my weight had not been added to the calculation). Still, I don't like those odds and anything less than 1:200 they offer an amnio to delve a little deeper.

Now that I've heard these results, I'm thinking, "Buttered side down, we always land on the shitty side of the statistics. I need to know." So yes, I need to know.

The amnio is scheduled for Tuesday morning. I've been advised to take the day off work and rest afterwards. I know what happened to Manuela (bless her) and I'm scared to death that the amnio will result in a miscarriage. But I still need to know.

Until Tuesday, I have to deal with this and find a way to put it out of my mind. Sorry Aurelia, I'm not up to discussing the finite intracacies of this; my brain has already dealt the cards in my mind and regardless of our 98.5% chance of having 'normal' results, I am not going to be at ease until we get results in our hands. They will try to do RAD testing (available in 1 week or less) as well as the full testing (available in 2-3 weeks) so I just have to sit on edge and wait.

It's going to be a very long, trying, stressful couple of weeks. And no, I don't need that. But that is what I'm faced with. Thank you all for your positive thoughts; just knowing that you are out there thinking of me makes a difference. I think I'm going to hibernate til Tuesday, because I'm terrified to do anything else.