Tuesday, July 29, 2014

I am a mother of 5

Hello Dear Friends,
It's been some time since I've been here - I guess I just needed a break to digest and just try to deal with everything.  I've been trying to journal in my private notebook at home, as so much has happened.  I will summarize the last 4 months as best as I can.

Thank you so much for all your prayers and kind emails.  Following the CVS testing, we learned that the baby we named Asia not only had Alobar Holoprosencephaly [her brain was not forming properly], but she also had Trisomy 13, a genetic defect that in most cases is incompatible with life.  Sadly, our little girl, Asia, earned her wings on Wed. March 19th.  I had just started my fifth month of pregnancy and was feeling good.  I had had a bit of spotting and was worried that her birth may be imminent, but I had an ultrasound and an OB appointment that Thursday and I was hoping to see our little girl.  Unfortunately, it just wasn't meant to be.  Freddie had left for work and I was resting on the couch after breakfast - Sophie had just told me that she needed a diaper change and so I got up to put my coffee cup on the kitchen counter, when there was a huge gush of water that soaked my bathrobe and nightgown. I knew my water had broken and that I had just delivered Asia.  I made it to the bathroom only to discover that indeed, our sweet little girl was here, attached by a very short umbilical cord.  I kept trying to call Freddie, but he wasn't answering - finally I called my mom who lives down the street and I begged her to rush over. The few minutes it took her to drive over seemed so long.  Finally, she was there and I asked her to cut the umbilical cord and get me something to put Asia on.  She was so tiny - she fit into my hand.  She was very fragile, her skin was almost translucent.  She had long fingers and toes, and a long torso like Sophie.  I cried and cried and cried.  I didn't want things to end this way - I had planned a lovely birth in a hospital, where Sophie could meet her little sister, surrounded by family...but here I was, alone and honestly scared to let Sophie see her sister - she was coming upon 2 and I was worried that she would be scared. Finally, I got through to Freddie and he rushed home.  To make a long story short, we had time at home to spend with Asia, then my OB insisted that I rush to the hospital and was admitted to the Perinatal Palliative Care room, where they treat terminal births.  Our nurses were amazing and took such good care of us. My mom stayed with Sophie all day, until we returned home at night.

Thing were made worse when 2 days later it turned out that despite taking meds, there was still a retained piece of placenta and I was rushed in for a emergency surgery.  Freddie had to go home to take care of Sophie, my mom was ill and I was in the ER alone, grieving and scared out of my mind.  I had never had surgery and I was so scared of what might happen.  Luckily, the surgery went well and I was released that same night at my request - I was home in bed with Sophie by 3am.  Sophie had never been alone from me that long, and even when I called Freddie at midnight to tell him I was being discharged, I could barely hear him over her crying.

We held a small, private funeral. We didn't invite or even tell anyone except my mom.  It was small, private and intimate. Only the people who had met Asia and loved her were there.  I had made a flower arrangement for her - but it just didn't seem to suit her.  We had had Asia cremated the week prior - I insisted on outfitting her cremation box with an Angel Blanket I had knitted in a calm pink, photos of all of us including Sammy's ultrasound and Sophie's announcement that she would be a big sister, a small bunny to keep her company [I bought two and kept the other one at home].  We decorated her cremations box with stickers and flowers. The entire experience at the funeral home was horrid, with insensitive people, stupid rules and ignorance, not at all what I had expected, but that is another blog post...

Sadly, we received no support from friends or family...again.

In the months since, I have healed physically - the first 3 weeks I couldn't lift anything, so my mom went with me everywhere as I couldn't put Sophie in her car seat or lift her up on the change table.  Both Freddie and I turned 40 - further genetic testing revealed that neither one of us is a carrier for Trisomy 13 and we were cleared to try again.  Although I don't feel emotionally ready to continue our TTC journey, we have forged ahead as we don't have the luxury of time.  We had also consulted with our local government adoption agency and learned all about the adoption process - but in the end, we have decided that adoption is not for us at the moment [again, another blog post].  

We had our first TTC cycle in June and I just knew that I was pregnant.  Indeed I was, only to miscarry a few days later.  I was devastated that "Tiny" had left us so soon.  July came and another faint positive showed up, only to end in another loss of "Teeny" this past weekend.  I'm tired, I'm defeated, I'm sad and I'm angry - how much pain does one family deserve?  Should we just stop trying?  I feel like I'm 'cheating' on these babies by trying again...and not grieving them properly by continuing TTC.  I don't understand the point of all this, the lesson that I'm supposed to learn, that kernel that should make me a better person...I keep waiting to understand.

It completely boggles my mind that we have one living child...but I am a mother of five.

Monday, February 24, 2014

How can I ask the Lord this???

Hello Dear friends,
It's worse than we thought, way worse, if that is even possible.

Our baby has been diagnosed with Alobar holoprosencephaly, a condition where basically the brain does not divide into two hemispheres, but rather is in one u-shaped chunk. We are undergoing further testing tomorrow to test whether there is also an underlying genetic condition like Trisomy 13 or 18, which they are suspecting. Basically, it looks like our child may not be able to breathe on its own, or have a pituitary gland which is required to control hormones which control various functions like kidneys, for example. In most cases, this condition is fatal. We are beyond devastated and have cried a million tears. It is likely that this is a genetic condition, so we are probably done having kids as well. It breaks my heart to know that Sophie will probably be an only child.  Our lives are in complete turmoil right now - our worst fears have come true.

We should know at our 15 week u/s the degree of severity of this condition, but they are suspecting the most extreme. The mildest forms can manifest themselves in developmental delays, similar to Down's Syndrome, while the most extreme can cause facial anomalies, like the absence of a nose, one eye instead of two...and death.  We do know that our baby has two eye sockets and a tiny nose, but the face is 'smooshed' and affected.  They believe that we are leaning towards the most severe end of the spectrum.  In milder cases, the child might be expected to survive, despite severe mental and physical challenges - but they are preparing us for miscarriage, still birth or death after delivery.  This happens to 1 in 4000 babies, so about once a year at their hospital and I guess we're just the lucky ones. Sadly, it breaks my heart that as a parent all I can pray for is a peaceful death for this baby - please continue praying for us, we need all the strength we can muster.

We are undergoing transvaginal CVS testing tomorrow [they take a part of the placenta for genetic testing] and we should have preliminary results by Thursday indicating if our child also suffers from Trisomy 13 or 18, or Down's Syndrome in conjunction with the above. I just can't believe that this is happening to us...in a way, again.  No parent should have to think about their child's funeral before they are even born...

Wednesday, February 19, 2014

Prayers needed my friends

Hello dear friends - the few of you who still stop by, despite me being MIA for a while now. I do play on updating my posts, as this is therapeutic for me and its a lasting footprint of the journey that we are on, but right now I can't deal with any of that.

I'm here asking for prayers to our good Lord. We had our 12 week u/s yesterday and got an urgent call this morning. Things are not looking good. Our baby seems to have serious problems - there is a concern about Down Syndrome as the nasal bone appears to be absent, although the NT cord fluid is good, so our chance of Down's is 1/410, which is pretty low. However, there appears to be a cyst or fluid or space in the brain, there are abnormalities with the abdomen, there is a problem with one of the legs. They are throwing around Down's, encephaly, trisomy 18 - basically not sure at this point what we are dealing with. We've been told that it likely that our child may not be able to survive outside of the womb, if we even get that far. We're being rushed into our local genetic clinic here in London, which is apparently the top place to be in Ontario [I guess London and Hamilton specialize in this]. We'll likely have some new blood test, another u/s, a fish [similar to amnio] and learn exactly what is going on either tomorrow or Friday. For us, termination is NOT an option unless my life is in extreme danger. We're both devastated to possibly be losing another child, but we hope and pray that the ultrasound is wrong - the baby was extremely active and wiggly, sucking his fingers, hiccups, the whole nine yards. Maybe, just maybe they are wrong on this - the stomach issue could correct itself with time as sometimes the intestines look like they are outside the stomach at this point, but there just seems to be so much going on. Please pray for us, that this baby ends up being healthy and that Dave and I can somehow get through all of this. I just don't know what I think, what I feel - I've cried all morning - we're trying to stay positive until we know for sure....also, as silly as this sounds, if you know of any non-traditional healers, miraculous places nearby, anything, I'm willing to try anything to save our baby.

Tuesday, June 25, 2013

TTC again

Now that Sophie is almost 15 months, Freddie and I have decided to try for another baby. We're both 39 and time is definitely slipping away if we want to have a larger family.  I went back to the fertility clinic to get back on clomid and monitoring, like our pregnancy with Sophie and we hoped things would go 'easily'.  Well, this cycle just sucked as I'm just not ovulating.  Today is day 33 and my follicles are still tiny [2-4mm] and there is no ovulation in sight, so instead we'll stimulate a period using birth control and try again next month...but....

It turns out that they think its because I'm still taking Domperidone for breastfeeding and have suggested that there is nothing they can do until I stop taking the meds or stop breastfeeding. I'm so sad, as I didn't want to stop yet. I nurse Sophie to sleep [I doubt she gets any milk at our two naps, but I use the LactAid at night and I pump in the middle of the night and get about 4oz]. I know that just because I stop the Domperidone doesn't mean that my milk output will change...but what if it does? And what if stopping the Dom isn't enough and I have to stop breastfeeding altogether? That's the way she goes to sleep - I nurse her to sleep. Not only might I need to stop breastfeeding, but also find another way for her to nap and go to sleep.  Any ideas on how to transition her to sleeping on her own?  She's slept on me for the last 15 months - her entire life - I'm just freaking out a bit... I hate being 39 and in a rush to have another baby. Wish I could nurse her another year then start thinking about the next babe. :-(

Monday, April 29, 2013

I used to call them "Mom" and "Dad"

The last few weeks have been difficult to say the least, and I don't even know where to start. I'm so sad and upset over this situation that I just don't know what to do or how to behave, but sadly, the last few weeks have changed our lives and our relationship as we know it with my in laws.  

Allow me to backtrack.  A few weeks ago, my husband was called by his parents over to their place for a 'chat'.  Apparently, they had quite a few grievances towards him, but the main one was the they feel excluded from our lives and that we don't see each other as often as we used to.  Now to be fair, we have never missed a family dinner, we call them weekly and we see each other ever 2-3 weeks.  In order to get them more interested in Sophie, I asked my MIL to watch her once a week and she had done so for the last 4 weeks - but even that didn't go without a grievance.  It seems that my MIL was upset that I didn't trust her enough to leave her alone with Sophie.  This made me upset a little bit as it's not that I don't trust her, but I had explained to her that Sophie is going through major separation anxiety and she cries to the point of hives and hyperventilating if I'm not around. So the last 3 weeks I'd be upstairs while Sophie and grandma spent time downstairs.  I thought my MIL understood that Sophie needs to get used to her, and as she spends more time with her, I will certainly leave the house to run errands and let them be alone.

My husband, after being downsized, decided to start his own business and has spent the last year finalizing the space and is getting ready to open the retail side within the next few weeks.  The space still, however, is a bit of a construction zone, and yet my in-laws would drop by unexpectedly to see how things were going, sometimes twice a week.  This actually upset me a little bit as they didn't express this much interest in their granddaughter and frankly this is why I wanted my MIL to start watching her on a regular basis.  Freddie, however, asked that they please not drop by, but rather wait a few weeks until he's done with all the inspections before they visit.  He explained that he is very busy now working 16 hour days and needs to supervise trades people who come to work on the property, not to mention the slew of inspectors that seem to be there constantly checking one thing or another.  He also explained to them that there are liability issues having them, two mid-70 year old seniors at a construction site with live wires and debris all over the floors.  He expressed that he would love for them to visit then things are more buttoned up and he has more time.  Two weeks ago, my in-laws summoned my husband once again, demanding to know why he had requested that they not visit his new business, accusing him that he was embarrassed of his parents.  Freddie was incredibly hurt by all of this, compounded by their earlier comments about him being a bad son [they even accused him of never being around or helping them when they need it and this couldn't be further from the truth. I can't tell you how many times we pick up their mail when they are on vacation, deal with their home alarm system, Freddie repairs dad's computer ALL the time, he hangs their pictures, moves their furniture, etc., etc., etc.].  Needless to say, my in laws did not see his point of view at all.

So last week, I wanted to talk to my MIL about all of this, as I was excluded from these discussions.  I attempted to relay to her that all of this is adding a lot of stress and pressure on Freddie right now, and frankly on us, as the business is almost open, my mat leave is over and I'm being reassessed for disability leave once again, this means that at the moment we have ZERO income coming in, and so Freddie is devoting every waking moment to the business and to getting it operating and profitable...and that perhaps we could hold these discussions a little later once the proverbial dust settles a bit and we are in a bit of a better place.  Sadly, my MIL did not want to speak with me at all about any of this and then dropped a bombshell. She told me, matter of factly, that she knew they, meaning her and my FIL, were not my favourite people.  I said what???  What would ever give her that idea?  Apparently, there was one instance where they came over for a visit and I happened to take a phone call and then went to our open concept kitchen and made applesauce for Sophie.  I tried to explain to my MIL that with my illness I need a lot of help and I assumed that they were coming to see Sophie, and to help me out, allowing me to slip out and do a chore for my daughter. I wasn't slighting them or avoiding them...I was still part of the conversation from the kitchen, but nothing I said made any difference, I could tell it was falling on deaf ears.  My MIL also complained that we used to drop in to visit them when we were out running errands and that I don't do that anymore.  So once again I tried to explain that with my illness, I have a lot of pain and I need help.  When Sophie was smaller, Freddie worked from home and he'd run errands with me and we'd all drop in on my in laws.  Now Sophie is bigger and it takes more of an effort for me to get us organized to go anywhere, and since Freddie works away from home now, its just me - and frankly I'm exhausted at the end of a shopping trip, for example...not to mention we now deal with a routine and need to get home for a nap, Sophie no longer sleeps in an infant carseat that we can just pick up and take with us.  My MIL then told me that she also had 4 kids at my age and she managed to get out of the house with all 4 kids, and wouldn't it be good for Sophie to be in a new environment? This felt like a slap in the face - she was comparing herself to me.  Comparing a well woman to one who is sick with a chronic illness.  I made a snide comment that she must clearly be a much better mother than I could ever be as I clearly can't keep up - but as it turns out, later I learned that my MIL only heard that she was a better mother, and the sarcasm was lost on her completely.

Since things were tense, Freddie and I decided to pop over there last weekend and clear the air.  I spoke with my pain management therapist and she suggested that I write down how I feel when my MIL compares herself to me, how it makes me feel like a bad mother, like I should be doing more to keep up, realizing, that perhaps they don't know much about my illness or perhaps don't realize how much help I really need.  So I wrote a letter and I read it to them.  As soon as I started, my MIL crossed her arms on her chest and rolled her eyes - I should have stopped right there, but like a fool I read my letter.  I should have known that she would be so defensive that she wouldn't hear what I had to say.  I told her how much I appreciated her coming to watch Sophie, how much we love them and want them in our lives, but I also told her how it makes me feel horrible to know that she implies I'm not a good mom.  At the end, she was very angry and called it 'character assassination', despite the fact that I didn't attack her at all, it was all about me and how I feel about the situation.  The discussion went south from there with more accusations of Freddie being a bad son, ungrateful, and whenever he tried to explain how he felt he was told that his feelings were 'petty'.  My MIL also had a few tidbits for me - apparently they have never liked me, even since before our wedding almost 6 years ago.  She told me that she thought she'd gain a daughter when we got married, but she didn't even get a DIL and instead she lost a son.  She also told me that I'm 'Smyth' in name only - and when I told her that that was incredibly hurtful, she told me to stop trying to make it all about me.  How can it not be about me when she just told me I'm not a member of her family?  She also told me that I should be grateful for all her support when our 'baby' died - it killed me that she couldn't even use Sammy's name, and it angered me that she felt so entitled when they sent flowers via a florist [they didn't even come over] and months later they came to a memorial service we arranged.  They didn't speak with us about Sammy's loss, they didn't cry with us or spend weeks in therapy dealing with the loss of our child.  So for my MIL to bring that up stung more than anything.  It was clear how little she thought of me.  I told her that I wanted a relationship with her and not be in a situation where we are simply polite at family function and that was greeted with dead silence.  My FIL just kept saying that we should 'wipe the slate clean' - but how do you forget the nasty things she said to me and the fact that they hate me?  At the end of the night as we were leaving, my FIL asked for a hug, and my MIL also hugged me as if nothing had changed, but a lot had changed for me.

This week my MIL called Freddie asking what they can do to make things better. He expressed that an apology was in order for the nasty things my MIL said to me, and she denied every saying anything. Freddie held firm and told her that he heard her say it and her response was asking him if it was fair for me to attack a 70 year old woman.  Listen, I'm not looking for an apology, but it would go a long way to mending fences between us.  All of this puts Freddie in a terribly awkward position and I don't want this rift with his parents to affect our marriage at some point.  To be honest, I don't know what we'll do.  I think we simply pretend it didn't happen and continue going to dinners and letting them spend time with Sophie.  I will simply need to swallow my pride and smile awkwardly across the dinner table -but honestly, I don't know HOW I'll be able to do it, knowing that they hate me for stealing their son away from them. After Sammy died, I felt the fact that we shared a child in the family brought us all closer together and I started calling them 'mom' and 'dad', but I feel that I can no longer call them that.  The title of Mom and Dad is reserved for people who we not only love, but who love us back....and the latter is certainly not the case!

Saturday, April 6, 2013

Sophie's FIRST Birthday!!

I now join the ranks of all the other mothers who lament 'Where did the time go!?!?'.  I can't help it - but it's true. WHERE did the time go?  WHEN did the year pass me by?  HOW did my little girl get to be a year old already?  It seems like we brought her home from the hospital ages ago, and yet it was like the blink of an eye.

Sophie turned ONE on Good Friday and with the solemnity of the holiday, we opted to have her birthday party on Saturday.  I drove myself almost crazy throughout the week trying to get ready for the big day, with making bite size desserts for the 'little' guests who would be coming.  Luckily, my mom, for the second year in a row, coloured all the eggs for the Easter festivities on her own following Good Friday service...and may I add that Sophie was a total ham at the Good Friday service, flirting and smiling at anyone within eye-catching distance and melting the hearts of all the older ladies.  Anyway, throughout the week I enlisted the help of both grandma's to watch Sophie while I made marshmallow bunny tails, chocolate bird nests, rice krispie easter eggs, french almond macarons, devilled eggs in the shape of chicks, stuffed grape tomatoes which were displayed like a tulip bouquet on a plate...and vegetarian lasagna for dinner [as we fast until Easter].  I can say that Good Friday was a late night as we worked hard to get the house in order and finished cooking.

Saturday, we did the traditional blessing of the Easter baskets at church, came home for a nap, changed and then it was party time.  We had both sides of the family, along with a few friends.  Sophie was a total charmer and graced each guest was a tooth-ful smile consisting of EIGHT teeth!  She kept crawling all over the place and kept us all entertained as we collectively kept her away from the 'hot spots' like cat bowls, etc.  Normally, Sophie gets overwhelmed with so many people and typically doesn't eat dinner when the entire family is over, but this day, she ate the lasagna heartily, not refusing a single bite.  At cake time, even though I dislike the messy idea of a smash cake, I relented and got her a smash cake, following this north american tradition.  We presented Sophie with her little smash cake, and she was reticent to destroy it.  First she grabbed the candle, which I pulled out of her mouth. Next came a cement flower, which I took away as well - poor girl, mommy kept taking stuff away from her.  Finally, she had a bit of icing, but since I always try to feed her WITHOUT making a mess, she really didn't know what to do with this cake in front of her.  I finally took her hand and put it right into the cake - she had a strange expression of confusion and joy.  But she didn't do it again - maybe I've already instilled a bit of cleanliness in my girl?

At present time, she loved ripping into the paper and tissue.  She hit the jackpot with clothing and will be well dressed around the 2 year mark.  Overall, we had a wonderful party with our loved ones and it was so nice to see our little girl loved so much by so many people!!  Still, I wish that Sammy would have also enjoyed some of this love...but I digress...she partied till almost 10pm, which is about 90 minutes past her bedtime.  Even while she was falling asleep, she kept waking up excited, finding it difficult to settle down for the night.

I still can't believe it's been a WHOLE year.  Sophie is so big.  She can stand on her own and is already attempting a few unsteady steps.  She babbles and her personality is showing itself more and more each day.  I already miss the days when she was tiny and completely dependent on us for all her needs.  I miss cuddling with her on the couch all day...now she squirms if I hold her too long as she wants to crawl to her toys.  My little baby girl is turning into a toddler...and mommy already misses the baby days!!

Monday, March 25, 2013

He would have been 2...

It's a strange year.  We've been so busy celebrating a year of firsts with Sophie, that I've honestly been too busy to write my annual letter to Sammy this year.  Is it a terrible thing? I don't know.  I don't feel much guilt about it, as I think of Sammy daily, throughout the day and especially at night as I pray my prayers of thankfulness and gratitude for the blessings that we do have, and when I ask our Lord to keep Sammy safe and surrounded by love until we get there.  So is it really such a big deal that I still haven't penned my thoughts for him?  I'm fairly certain that Sammy knows and feels how much we love and miss him on a daily basis.  

Now that Sophie is growing into a one year old toddler, her personality and her character are showing more and more each day.  Naturally, this leads us to wonder all the traits that Sammy would have had.  Would he have her blue eyes?  Would he be a good eater like she is?  Would he have the same laugh?  Would he be as stubborn as she is?  More and more, as I think of Sammy, I wonder if actually Sammy would have been a girl...but for the purposes of this blog, I'll keep referring to Sammy as 'him'.

The nice thing is that after all this time, we can bring up Sammy casually in conversation and most of the time, I'm ok with it.  I still, often, have my throat tighten, but I don't cry.  We can talk about Sammy with some happiness and this is good.  I want to be able to talk about Sammy with Sophie, so that its a normal part of our family life for her to know she has a sibling.  We try to do that now when she randomly waves to the bookshelf or smiles at the ceiling - "Oh, are you playing with Sammy?"

I will write my letter to Sammy next week, once the dust settles from Sophie's first birthday.  I always write one on this blog, then write another personal letter that I put in his memory box and this year will be no different...except for the delay.

We love and miss you very much our sweet Sammy - you are never forgotten or far from our hearts!!!