Wednesday, December 24, 2008

Happy Christmas Eve

A tired Zoe gets ready for bed.

Zoe is all tucked in for the night. We got her dressed in her special Christmas Eve nightgown, hung the last ornament on the Advent tree, and hung up our stockings.

For those who celebrate, we hope that everyone has a great day tomorrow. We look forward to spending the day as a family. We are grateful that our families were understanding of our need to have it just be our little family of three this year.

Merry Christmas Eve to all, and to all a good night.

Update on RDSPs in Canada

Government finally makes RDSPs available- BMO only bank to offer it
After a year of reading about and being promised that RDSPs (Registered Disability Savings Plan) would be available in 2008, the government finally made RDSPs available. We had the choice (is it a choice if there is only one option? I think not) of going with BMO. The RDSPs became available on December 22, 2008 and you have to contribute before December 31, 2008 in order to get the grant for 2008. What this means is that we had to go to BMO, set up a profile, speak to staff who had no idea what they were doing and actually were incorrect in that they did not take Gavin's info which means he has to go back today. Then we had to call a 1-800 number (the same number that all Canadians were using and no, they did not have extra staff on hand to handle the extra calls) and wait 80 minutes to talk to an investment agent. I have to say, that when we did finally get through, the person was knowledgeable about RDSPs. So that was helpful. He emailed us the forms, we filled them out and faxed them today. According to the guy we spoke with, as long as BMO gets the paperwork by December 31, we will get the grant money. It does not matter if the actual RDSP is not set up until after the New Year.

They don't seem to have some kinks worked out quite yet. When I asked how we will know that they got the fax, his response was, "We haven't figure out how we will be contacting clients." He said we could call again and wait in line for another 60-90 minutes to speak with someone but they may not know because some of the accounts will not be in the system until after the New Year. When I asked how we can make deposits in the future, he recommended calling and giving the account number and password. On the forms we set the password but how can we know the account number if they don't contact us? His response, "We haven't figured that part out yet."

And so, in blind faith we have faxed the forms. Hopefully all goes well and Zoe will have an RDSP opened in her name.

Good News from Ontario
The good news is that Ontario has declared that a person receiving money from an RDSP will still be eligible for full disability support. We are setting up our assets in what is called a "Hensen Trust" which also does not affect disability payments. By leaving Zoe our money in these ways, she will still be able to get support from the government as an adult and use our money for the extra things like new clothes, travelling, hockey tickets, whatever she wants. If we did not set up this special trust and just left the money to Zoe, she would be disqualified from getting any public supports. It gets complicated when you are trying to think about all of these future things for your child who will be disabled and most likely unable to support themselves. I think Gavin and I are both relieved that the Hensen Trust will be finalized soon and that the RDSP has started.

Where to go for more info about RDSPs
If you are interested in setting up an RDSP for your child, go to http://www.rdsp.com/
Also, I have the forms from BMO, so if you don't want to wait in line on the phone, I can email them to you. Just let me know.

Monday, December 22, 2008

Zoe's birth- Genevieve's perspective

We haven't had the time to sit down and post all of Zoe's history so we are taking it one post at a time. Previously we posted about Zoe's diagnosis and my labour story. Now I wanted to post about Zoe's birth from my perspective. I really wish now that we had it all on videotape. I think watching the video would be really hard in some ways but perhaps it would help me to process some of what happened. We tend to use this blog as an outlet for ourselves. As always, people can chose to read it or not. Some posts are more exciting (or cuter) than others. I like recording it all though, the good and the bad. I like the idea of Zoe being able to read her history and contribute to the blog herself some day.

For now, here we go:

The First Time I Saw Zoe
Gavin and I knew all along that we were having a girl- we both just felt it. The midwife student had accidentally told us late in the pregnancy that it was a girl, but we weren't too surprised. And so when the baby finally did come out I did not think to ask if it was a boy or girl. I just looked to see if the baby was ok. At that point, we knew about the heart problems so I was worried. During the pushing phase of labour, the heart monitors kept losing the heartbeat. We weren't seriously worried since we knew it was faulty monitors, but still I wanted to see for myself that everything was fine.

Unfortunately, that squiggly, pink, screaming infant was not the sight I saw. Instead I was met with a white/grey baby with a cord around its neck and I could see she was not moving. I had great fear about the cord being around the neck since I had an older sister who lost a baby during birth due to the cord being wrapped around the neck. My midwife quickly flipped the baby and unwrapped the cord that was wrapped around the neck twice. We are told that this did not harm Zoe in any way.

But back to first impressions.

The baby was handed over to the respiratory therapist who was already in the room due to knowing about the heart condition. Gavin held my hand but was looking at the corner where they took the baby. I told him to go to the baby. He took off and I immediately asked the midwife if the baby was alive. I can't remember her exact response, perhaps it was something about focusing on delivering the placenta. But I do remember that she did not give me an answer. I knew that was not a good sign and I asked again. This time she honestly answered, "I don't know."

It felt like forever, it was probably just a few minutes before Gavin returned to my side. I could tell by his face that there was something seriously wrong. He did say though that the baby was breathing. Later, I learned that Gavin had watched as they tested the baby's reflexes and his concern was how her arms just flopped at her sides and she never made any noise.

I could not see this.
I was busy delivering the placenta.
Stuck on a table.
Unable to see the baby or wrap her in my arms.
Which is what I wanted most.

Zoe goes to the NICU
After a few minutes? I am not sure how long, the respiratory therapist decided that the baby was not breathing well enough on her own and wanted to take her to the NICU. As they got ready to leave, I asked if I could see the baby. She brought her to me and finally I got to see her little face. Her eyes and mouth were tightly shut and her fist was on her chin. She looked pale but perfect. I could tell that she already looked a lot like Gavin. It took all of my self control not to grab her out of the therapist's arms. I could see that she needed to go to the NICU but I wanted her to stay with me. Gavin and I never got to hold her before she left the room. Gavin followed the baby to the NICU but was asked to wait outside while they got her settled. Intubation (for those of you who have never seen it) can be pretty violent and they don't usually let families watch.

Gavin and I wait to see the baby
After Gavin returned from being kicked out of the NICU, I could tell he was really worried. I tried to get him to sit down and relax (yeah right!) The midwives were amazing and got us some tea and toast. I had to wait at least thirty minutes until I was allowed to stand up. All sorts of scenarios ran through my head. I just tried to focus on getting something to eat and drink to build my strength. Getting Gavin to sit down for one minute. And getting to the baby as soon as possible.

The Doctor Gives us a Report
After about 30 minutes (again could have been more or less) a doctor finally came to update us on how the baby was doing. At that time, she was still just "the baby" since we had not named her yet. I can not remember all that was said but the doctor mentioned that something was seriously wrong. He mentioned rocker bottom heels and the small size (born at 42 weeks plus one day, Zoe weighed in at a whopping 5 pounds, 3 ounces) being indicative of a syndrome. Both Gavin and I have experience working with trisomy 13 and 18 kids who have rocker bottom heels. They do not typically live very long after birth. He told us the various tubes and why they were inserted into the baby. He also used words like "dsymorphic features, low set ears, wide nasal bridge, small chin." While I appreciated his honestly, I wish he had spoken to us after I could have seen the baby for myself. Because we had already learned that something was wrong, when I saw the baby in the NICU and had my first good look I kept looking for these "dsymorphic" features instead of just enjoying looking at my new baby for the first time. I suppose he just wanted to prepare us for what could lay ahead. But I still feel very sad that I never got to just hold Zoe and discover her for myself in those first minutes of life. It feels like even those first precious moments (which should be filled with excitement and bliss) were taken away and instead filled with fear, worry, and sadness. In some ways, it feels like most of her infancy was taken away in this manner.

But what choice did the doctors have? They thought that Zoe had a horrible syndrome that could kill her in days. I can not imagine how difficult it is to give families this news.

Anyway, back to Zoe.

First Trip to the NICU
The doctor said it would be ok for us to visit the baby. We immediately got a wheelchair and got ready to go. I remember the midwife looked very worried. This was her first birth where the baby was not healthy. She hid it well and was I not trained to read people, perhaps I would not have sensed her worry. I hugged her as I sat down in the wheelchair and I began to sob. I realized I would never get through the night if I thought about anything or hugged Gavin. And so instead, I just held his hand as he wheeled me down the hall.

As we approached the incubator the baby was in, we could hear staff talking. What I remember is a comment about it being good that mom had no drugs on board since the baby was so flat at birth as it was. Also, someone said something about it being a shame that it was our first baby and all. The midwife went behind the curtain and cheerfully said, "I have mom and dad here," which promptly shut the staff up.

My Beautiful Dsymorphic Daughter
It is difficult now to remember just what it was like seeing Zoe for the first time. Now, every curve of her face, every eyelash, every hair is so familiar to me. Then, it was such a weird feeling. Here is this child I carried inside of me for ten months and I don't even recognize her. When I saw her "rocker bottom feet" it made me smile. For months I had been feeling her zip an appendage along my insides. I could never figure out- was that a hand, a foot, a knee? It did not feel like any of these things. Now I understood it was a rocker bottom heel. And I knew that this baby was mine because I recognised the feet. I wanted to pick her up, snuggle her against my skin but I was not allowed to do more than hold her hand. I was not put off by the tubes. Gavin and I work in a hospital so the tubes did not bother me. But until the baby was considered "stable" we were not allowed to move her.

Naming Zoe
Gavin and I stood at her side, discussing which name suited her. All along we discussed names and Zoe was always a favourite of Gavin's. I resisted this name. It is complicated to explain it all but I will try.

The entire pregnancy, both Gavin and I always knew it was a girl. And we both always suspected that the child would have special needs. Was this paranoia from working at the hospital or just parental instinct? Gavin has a cousin Zoe that has down syndrome. I was worried that if we named the baby Zoe and the baby had special needs, everyone would assume we named her Zoe since the other Zoe had special needs too. This was a silly thought but I wanted to honour Gavin's cousin Zoe by naming our baby Zoe but I did not want it to mean less if the baby was going to die. That doesn't make sense I know.

Toward the end of the pregnancy I got a very strong feeling that the baby was a Zoe and I wasn't going to have much choice in the matter. Perhaps I thought by resisting the name Zoe, I would prevent the baby from having special needs? Who knows what twisted thoughts I had- I was a pregnant lady who was way overdue and just wanted to have this kid already!

I loved the name Zoe and its meaning. Zoe is Greek for "life." I thought this was perfect since Gavin and I never thought we would be able to have biological children together. I liked Zoe paired with Alexander, a good strong family name. Both suited Zoe well. And at that point we knew that this kid needed a good strong name to match her determined personality.

And so, standing by her bed I could see that she really was a Zoe. We had debated some other names and we tried them out. Said them to the baby to see if they would stick. But no, Zoe it was.

It wasn't until later that we decided for sure. During a bomb scare (what my American relatives who have heard my labour story must think of the Canadian health care system! I swear it is not normally like this!) we called down to the nurse to let her know that we had named the baby Zoe. She even made a little name card for her. But more on that in a later post.

We were given a picture and we knew what that meant....
While we were sitting with the baby, a nurse gave us a picture that she had taken of the baby. It was from the Linden Fund. My mouth went dry when she handed it to us. I knew these were pictures that staff took just in case the baby doesn't make it so the parents have at least one photo.

Suddenly I realized how serious this all was.
Suddenly I was really scared that we could lose her.
Up until then I thought, "I don't care if she is dysmorphic, has funny shaped feet, or has a syndrome. She is going to be ok."
Suddenly I thought, "Wow, we could actually lose her."

Now Go Get Some Rest- Yeah Right!
We were asked to leave so they could finish "settling" the baby. The midwife said she had to finish checking me and would help us get settled in a room. Again, my midwife was thoughtful and had us moved from the room with a roommate to a room with the second bed empty. If we had to have a roommate with a healthy baby that night, I don't know how we would have coped. As it was, it was a terrible night. I think we made it maybe three or four hours before we went back to the NICU. We were told to get some rest, who knew what the next day would be like. After having the baby inside of me for ten months, how could I leave her all alone with strangers? I couldn't stand the thought of her being without us. All we had with us was that picture the nurse gave us. Initially we could not look at it. All I saw in it was the dysmorphic features the doctor talked about and the possibility of losing her. Now, it is one of my favourite pictures of Zoe because it reminds me of the first time I really saw her and how far she has come. Gavin posted this picture on the very first post on this blog, so I won't repost it now. Instead, here is another wonderful picture of my beautiful daughter:


This picture is actually from the next day when we were able to just sit by her side and speak to all of the different specialists. We were still not allowed to hold her, but we could stick our hands in the incubator and touch her. I just had to include a picture to show just how gorgeous Zoe was at birth. It's hard to believe she is 22 months already. Where did my baby go?

Sunday, December 21, 2008

Snow Fun!

It's that time of year again. The time when I wonder why the heck I agreed to move to Canada in the first place.....

Zoe (today) December 21st- her 22month birthday! Doesn't she look thrilled to be outside in the snow? She kept pushing her hat down over her eyes, I guess it was too bright for her with all the snow glare. She "helps" mom or dad shovel by sitting in a snow bank and telling us what to do. This year she is arching her back so she slowly slides down to the pavement. I can't really tell if she likes this or not, but she is not upset so at the very least she will tolerate it so we can get some snow shovelled and she gets some fresh air.

Zoe from March 2008. This is what we have to look forward to for the next three or four months. Yay!

All worn out from a busy day. Zoe ignored this dolphin up until a few weeks ago. Now she likes to pull it down into her face as she is falling asleep. It looks like the dolphin is keessing her.

Monday, December 15, 2008

That pesky pneumonia that just won't go away!

Lungs sounding better but still not clear.
We went back to the doctor's today for a lung and weight check. The doctor stated that Zoe's lungs are "a little better." I asked if Zoe still had pneumonia and she said, "definitely but the right lung is nice and clear now." So I guess that is something. I will be very happy once I hear that both lungs are clear, but at least she is improving slowly. As long as nothing changes, we don't have to go back to see her for one whole month! That will be the longest we have gone without seeing a doctor since September. So we will keep our fingers crossed, continue doing the respiratory therapy, and hope that we have a nice quiet holiday at home.

Weight Gain!
Zoe gained 180 grams (about 6 ounces) whoohooo! Her appetite has definitely increased and she is back to eating table food that is cut up in small pieces. We still give her pureed food at times when her mouth gets tired. We are really happy that she is not having the choking and coughing she has been having for the last few months with table food. It is great to continue forward with our eating goals. One of the reasons we go to this doctor even though she is now 45-60mins away since we moved is that she is great at seeing the whole picture with Zoe. She has always been supportive about us giving Zoe as normal a childhood as possible. Eating has taken a lot of work for all of us, but we feel strongly that oral eating is the best mode of eating for Zoe. I have to admit that the tube feedings Zoe was on a few weeks ago really made me realize how much easier that path would be for all of us. It was so easy to get the calories into Zoe. But the gtube comes with many problems. Some kids do need tube feedings, but we feel confident that Zoe does not need one at this time.

Fun News- Getting ready for Christmas.
Zoe chopped down her very first Christmas tree this past Saturday. Since she still has a nasty cough, we picked the first tree we saw, gave Zoe a quick turn at sawing, plopped her in a snow bank, and chopped it down as quickly as possible.
I am really glad we did not plan to travel this Christmas since we would have had to cancel our plans. We really look forward to grandma coming after Christmas to spend some time with us. I think she will be very surprised at how much Zoe has changed since she saw her in July. Her communication and social skills have really picked up recently.

Saturday, December 6, 2008

Friday, December 5, 2008

Daddy's teeth

I alluded to not working much the past three weeks in the last post, so I thought I'd explain (this is Gavin). I'm not sure if we had mentioned this before, but I had some oral surgery this week on Tuesday so I've been off recovering and eating a lot of soft foods this week. The previous week I was in hospital with Zoe (she was an inpatient on the same floor I work on) and the week before that both Genevieve and I took a bunch of time off to look after Zoe at home. So it has been a very odd three weeks, for my professional as well as my personal life.



Zoe an inpatient on my floor



While Zoe was admitted, she was inpatient on 7C, one of the units I cover professionally as a Child Life Specialist. So I knew all the staff, and was seeing kids I work with on a day to day basis all the time, while walking back and forth getting things for Zoe. And to get linens and supplies, which of course I know where they are, I'd have to ask staff. I generally try to keep my personal and professional life seperate, but since Zoe came along this has become increasingly difficult and last week it was impossible. I had families asking about how my daughter was doing, and I have to admit I struggled a little bit keeping it all seperate. There were times when I ended up doing work stuff, and there were times that I really wanted to connect with other parents on a parent to parent level, rather then a professional to parent level. There were times when I found myself doing both. It is very hard to describe how this personal/professional conflict is not only logistically difficult but gut renchingly hard at times. Not just last week but frequently at work I see situations so similar to what could occur with Zoe or that are occuring or have occured that it just feels emotionally quite overwhelming. My job is one where you have to be emotionally. . . available, or at least aware, and having Zoe and with her being so involved with the health care system it places a huge toll on my emotional reserves. Sometimes work seems too much like home and home is, well, work (like last week, where I spent a continuous 120 hours or so at "work" with Zoe as an inpatient). This last Wednesday- my usual day off home with Zoe, was the first time in a month that Zoe wasn't at the hospital for an appointment of some kind.

It really does sometimes become very hard, to both do my job well in the way I need to and to be a valued employee. Being Zoe's dad is different- it is just who I am and I have no choice but to do it with everything I have. And usually I am that way with my job as well, but it gets so difficult and emotionally exhausting on top of everything else going on. At some point I might make a posting on this topic itself - it sort of deserves it. Maybe one of these days I'll get around to making one. Anyway, onto my new teeth!

Oral surgery (doesn't actually have anything to do with 1p36 so skip it if you want to).

Here is the background to the oral surgery thing, for those of you who don't know (which would be most of you). I have had a lot of trouble with my teeth since my early 20's. I had a lot of various treatments for cancer when I was in my teens, and it seems like it really did for my teeth. No definitive explanation was ever found. One dentist thought it was the NG tube I used to put down and it causing acid reflux (which it did). It could be radiation or chemotherapy, or possibly nutritional or hormonal causes during the structural and formative development of my adult teeth. I just learned (from an article on Neanderthal man I was reading in a National Geographic in my dentists office) they can put Neanderthal teeth in a particle accelerator and "read" the development of the teeth, tracing nurtitional deficits, periods of stress, etc. Now this has never been done with my teeth- to do would involve putting my head in a particle accelerator which would, I imagine, be fatal (maybe not- I'm no physicist) but it made me wonder if my teeth just never developed properly at a structural level due to all the other stuff going on at the time. Certainly, looking back I had some poor dental hygiene practices at times; my priorities were not on my teeth as my very survival/continuation as a living person took precedence. If I could go back and change this I would, but what difference it might make I don't know. I've seen some very bad cases of dental care in the hosptials I've worked in, and they generally would improve with better hygiene and treatment. Such was not my case. Since my 20's I've been fighting a losing battle to keep what I had and make what I had functional. I have spent thousands of dollars and tried so many options; at times my dental hygiene regime has been pretty grueling and time consuming (not to mention money consuming!) For the passed four years or so I haven't had a good solution- I haven't really had functional molars for ages and I had continual absesses and cysts and swollen lymph glands and nasties like that. So the time came to finally move forward on a long term solution.

(for those of you who are squemish about dental stuff you might want to skip the next bit)

So that is the background. This week I finally did what I had been trying to avoid for so long, and I had basically all my teeth removed. They were all crowned anyway- I think I may have you only one left that was not root canalled. The crowned molars I had left (six lowers in all) had all broken and had nothing to oppose against, as I had my six top molars removed with my wisdoms about four years ago (plus my first attempt- very unsuccessful- with a partial denture). I had put this off for years, for expense, for time, for ego, and most recently for Zoe. I thought I'd have to postpone again last week, but then Zoe got released so I went ahead and got the surgery. I now have a full lower denture and a partial upper denture- my six front teeth are a bridge type crown thingy I've had for awhile and which is holding up for now. I got two implants put in my lower jaw that the lower denture will eventually lock onto. So far I am extremely happy with the results. The dentures fit great (even the lower one, even though the implants won't be hooked up for another while yet). I can't really chew on it yet, but the pain has been much less then I expected. Genevieve has been wonderful staying home and taking care of me and Zoe has been especially gentle with my face. She knew I wasn't feeling well on Tuesday and kept signing "Daddy". So cute!

So I am very relieved to finally have got this done, and to be pleased with the results. I was at the point where the teeth I had were a constant source of infection and pain, and I am sort of glad to rid of them. And it is so odd to see myself in the mirror with a full set of "teeth"- I haven't seen that in years! Damn I look good! And I am really looking forward to chewing my food again- years of grinding all my food with my front teeth makes me wonder what it will be like to have functional molars again!! Back in the Neanderthal days when you lost your molars that was it man, your life is over - feed you to the wolves, you were dead. I'm glad we live nowadays and I can get away with my "falsies"- being eaten by wolves doesn't seem very nice.

Sorry if this is a lot of detail, and not related to 1p36 stuff at all, but I just wanted to share something that had been a long time coming for me, and that I am very happy to have finally done. It was a bit painful, and very expensive, but it was past due to get done and I am happy it is. I am actually quite thrilled to finally have my "old man false teeth in a jar". It is a huge relief to have it done and to have the results be so positive. Thanks be to Genevieve and Zoe for seeing me through- they are my world.

Encouraging doctors visit yesterday

Hey all,
well, Zoe went back to the pediatrician yesterday and we got unexpected good news. Zoe's lungs now sound much better- almost as good as at baseline, according to Dr. Taylor, her wonderful pediatrician. This means Zoe doesn't have to go back for a full 10 days, when she has to go back for her monthly RSV shot (quick everyone- touch wood. Hopefully she will continue to improve).

What a roller coaster. It truly has been a bit insane these last 12 weeks or so. Thank you to everyone for their support and kind words. It has been really hard to be trying to balance work and Zoe's health and the worry of her getting worse and the knowledge of just how much worse it could get. Because really, she has been doing pretty well, if you count four antibiotics, five days in hospital, two ED visits, one allergic reaction, at least a dozen doctors appointments and twelve weeks of illness as good. We know it could get so much worse, and does for some of the 1p36 kids. Some of the kids we know have fairly severe respiratory issues, and they began around Zoe's age, so we worry about this being the start of something. But then we step back and try not to think ahead to much, lest we go insane (or maybe even more insane then we already are).

Look at that hair!!!


So this was suppose to be an encouraging post, so I'll end now on the note that Zoe is sounding good and getting back to giggly girl self. She went to school (what we call her daycare) today and yesterday and did really well. It's great (and a bit weird) to get back into a routine. As for myself, I don't know what that is like myself- I have only worked three days in the last three weeks (see the next post)- it's going to be very strange to get back to work next week!

Thanks again for your positive thoughts and comments- we do really appreciate it. Keep 'em coming!

Monday, December 1, 2008

Disappointing Doctor's Visit Today




















Zoe cracking herself up in hospital. I love that smile!
Feeding Issues
We went back to the pediatrician today for her to listen to Zoe's lungs and assess the feeding issues. When we were discharged last Thursday, we went home with the NG feeding tube in place. Zoe pulled it out on Saturday so we decided to see how she would feed without the tube. Saturday and Sunday she did not eat as much as she usually does, but she did well enough to stay hydrated and keep her diapers wet. Today Zoe actually did awesome with feeding. So I am hoping that she will continue to eat lots and make up for the weight she lost. At the doctor's today, Zoe weighed 7.9kg (which is still .4 under what she weighed two weeks ago). Since Zoe is eating well today, we will continue without the tube and see how she does.
Lungs Sounding Worse
The biggest issue that the doctor was concerned about is that Zoe's lungs actually sound worse than they did last week. They sound "more wet, wheezy, and crackly." I can actually hear a bit of a wheeze/whistle when Zoe breathes. The doctor wants us to return to her office on Thursday so she can have another listen. In the mean time she is going to look into inhalers for Zoe. The issue with the inhalers is that they will speed up her heart rate since they are a steroid and the doctor is not sure if this will be too much for her heart. So if Zoe does need to start inhalers we may need to go back into the hospital to be monitored while the medication is started.
As you can imagine this was very frustrating. I was hoping to hear that Zoe was improving and we could take a break from so many doctor visits. Our doctor is usually very positive so it worries me to see her so concerned. The good news is that Zoe is doing well at the moment and is not in respiratory distress. We will just have to keep hoping that she will be able to get over this by herself without further medical intervention.
One last kicker- needing a special needs car seat
As if this wasn't a down enough visit, I asked about car seats and got an answer I was not expecting. For now, Zoe has been in the rear facing infant car seat that can accommodate a child up to 22 pounds. Zoe is not even 18 pounds so she still fits it. However, Zoe is getting so tall now that her head is starting to reach the top of the seat. I asked if we should start looking at getting a front facing car seat but the doctor is concerned that Zoe does not have the muscle tone to be front facing. In an accident, Zoe would not be able to protect herself during impact. So now we have to look into getting a rear facing seat that can accommodate a longer child. She recommended checking convertible car seats and see if she can fit into one of those. If not, we will have to look into and order a special needs car seat. We know a couple of 1P36 kids who use these. I was just disappointed to hear that Zoe is not ready yet to just move into the next step car seat. Oh well, some day right?
Summary of Hospital Visit
I am not going to detail everything here but basically we ended up in hospital because the first med did not get rid of her fever and the second med gave her horrible diarrhea with blood in it. Also, she started having a lot of pain with her NG tube feedings. The third med she was started on in hospital ended up giving her a terrible rash and she ended up thrashing about for over ten hours and that was with benedryl on board. Zoe tolerated the fourth med so we were released to continue the med and tube feedings at home. We are glad it was a short visit but it was not an easy one. Zoe had a lot of pain because of the diarrhea, rash, and possibly chest pain with the pneumonia. It was really hard to see her in so much pain and to have her sign "mom" or "dad" and look at us like we should fix it. But she is feeling much better now. She has big smiles and is very playful again. So hopefully we will figure out this whole lung thing and she will keep improving.
Improving Communication Skills
Throughout all of this, I have been very impressed by Zoe's communication skills. Her signing has gotten to the point where she was able to tell us that her stomach hurt her when she had the diarrhea. Also, yesterday she was signing that she wanted the tube put back in her nose because she was tired of eating with her mouth. It was great to see her figure out what the tube is for and that it is easier than eating with her mouth. However, we do not want to go down the permanent tube route so we are pushing her with her feeds again. It is really great to see that language comprehension and expression coming together for her.

Friday, November 28, 2008

We're Home

We are home now with the feeding tube still in place. I am not going to write much since I am exhausted, but I did want to say thank you for all of your comments. I printed them off and read them to Zoe so she would know how many people were thinking of her.
It has been a really hard week. We did not expect Zoe to be in so much constant pain and that was extremely difficult to watch and feel like we could not do anything to stop it.
But at least now we are home and hopefully she will start feeling better soon.

Monday, November 24, 2008

Zoe In Hospital

Hey All,
Just wanted to let people know that Zoe was admitted to the hospital yesterday. We are hoping to make it a short stay but first we have to figure out what is going on. They are now thinking that the pneumonia is a symptom of something else going on rather than the problem. We'll see.

Saturday, November 22, 2008

Zoe temporarily on tube feedings again

Zoe looking a little shocked after getting the tube in. Even with a tube shoved in her nose she is gorgeous!

Showing off her arm boards that we taped in place so she can not pull the tube out when she is in her crib. Check out that double chin and those teeth!

Zoe at seven weeks just before we got rid of the feeding tube. I wish I could say getting rid of the tube solved all of her feeding issues, but as we have already talked about numerous times Zoe continues to have difficulty with oral feeding. We are just so happy that she is able to eat and drink enough to sustain herself when she is not sick.

Thank you to everyone for their thoughts, comments, and phone calls right now. We truly appreciate the support.
Update on Zoe:
We went back to the pediatrician's office yesterday (Friday) to see if the antibiotics were working. The good news is that the antibiotics do seem to be working. Zoe's fever is down and the doctor said that her lungs sounded better than they did on Monday. So, the issue now is that Zoe is still refusing to eat and drink and is getting dehydrated. She also lost a little over a pound in the last week. A pound for most of us would be no big deal, but if you only weigh 18 pounds, a pound is not a good thing to lose.
The doctor gave us two options. One was to force feed Zoe with a syringe. We did not think this was ideal for a few reasons. First, Zoe already has eating aversions and we already push her constantly with the eating. We were afraid to make this worse by force feeding her. Secondly, it takes us about 20 minutes to get half an ounce in Zoe with a syringe (we have tried this before). Obviously this is not enough fluids and therefore she would still be dehydrated. And thirdly, we were concerned that Zoe would start having negative associations with syringes. Zoe takes her heart med by syringe three times a day and at this point she is very cooperative with taking it. If we start force feeding her with syringes though, she may resist us giving her the med in the future.
The second option was to return to the emergency room and have them attempt IV access again. I asked if it would be possible to rehydrate her through an NG (nasal gastric tube that goes from her nose into her stomach) rather than an IV. The doctor said this would be a good option but we would still have to go to the hospital to get the tube placed. At that point I asked about a third option. Since we had two NG tubes left over from when Zoe was on tube feedings as an infant, I asked if we could insert the NG in the doctor's office and then take Zoe home. The doctor was concerned that we would not remember how to run the tube feedings. I explained that we were more than comfortable with tube feedings (both Gavin and I work in the hospital and see tube feedings all the time, Zoe was on tube feedings for seven weeks, and Gavin himself used to be on NG tube feedings). Also, if we did end up in hospital I was concerned that Zoe would not get as much rest, would be more resistant to eating, and might catch some other illness floating around. The doctor said she would have to talk to her colleagues and then would let me know.
When the doctor returned to the room, she said she felt Zoe being at home with the NG would be the best plan. We made a plan for if we run into trouble over the weekend. We have a walk in clinic we can go to and there is also the emergency room. I had brought the NG tubes with me in anticipation of what the doctor would say, so the nurse came in to insert the tube. The funny thing was the nurse hasn't done an NG in a long time so I had to show her how to measure, insert, and tape the tube. Zoe, as always, did so well. She was not happy about having the tube inserted and I wish I could have provided her more comfort instead of guiding the nurse in her job. It was actually good to see Zoe put up such a fight. She immediately pulled part of it out as soon as her hands were free. After I reinserted that part of the tube and retaped it, Zoe kept trying to blow it out her nose. Eventually, I got her settled and calm on my shoulder and she started giving me a sad look while signing "mom" and then touching her nose. It is like she was saying, "Mom, there is something in my nose. Fix it!"
So, after fighting so hard to avoid tube feedings, I found myself advocating for them. It was kind of weird. But I am really relieved that she has the tube in. Since it is temporary it does not carry the emotional stress that we had when Zoe was on tube feedings before. We KNOW that Zoe will be able to eat and drink again once she is feeling better. Zoe started having diarrhea today so it is a relief to know that we are able to keep her hydrated. She did start asking for food today but was not able to eat more than a few bites. She is still only drinking about an ounce of milk at a sitting. After eating for half an hour and not getting much down we decided to give her some milk through the NG. Zoe got upset when I took her out of her highchair and kept signing "eat." I explained to her that I didn't want her to waste all her energy eating and a half hour is plenty of time. It was great to see her feeling hunger. And her temperature is back to normal today. Both good signs.
Our plan is to mimic her normal eating times and amounts. We will give her half an hour to eat what she can and then we will top her up with extra pediasure mixed with milk in her tube. We have to put milk in the pediasure because we notice that straight pediasure gives her a lot of reflux. It is nice to be at home where we can control it and give her what we know she would typically eat and drink. At the hospital they would want her on a schedule and we would rather let her try eating on her own first. Hopefully this way we can avoid going to the hospital.
Our respite worker, Riann, has been helping us out through this. It has made such a difference to have some help. Gavin was unable to be at the doctor's on Friday so it was great to have someone there to help me. Also, Riann came over Friday morning so I could sleep in until 9 before getting up to go to the doctor's. It was great to be somewhat rested before dealing with the doctor visit. It is amazing how much more rational (and how much less of a b$%ch) I am when I get a little sleep!
Update on Other Doctor Appointments
As Gavin pointed out about my last post, I did not mention any updates about her ortho or other recent appointments.
Here are some updates:
Neurosurgery- We are holding off on getting an MRI until next year due to IV access. Because Zoe is such a hard stick, they may need to do a central line in order to give her the anesthesia. Last year, when Zoe had her MRI of her spine and brain, they were unable to get an IV in despite trying over 20 times. Zoe ended up looking like a pin cushion and they ended up doing the MRI without IV access which does pose some danger. So they decided it was not worth the risk of a central line to get the MRI this year since Zoe still has no symptoms of any spinal problems. The MRI last year did show a large syrinx (collection of fluid in the spinal column) so that is why we are keeping an eye on it. Zoe may need surgery in the future to drain the spine and put in a shunt.
Orthopaedics- Zoe's hips and feet are now considered "normal" from a bone perspective. Although Zoe is still tight in both the hips and feet, the doctor says she will not need surgery. So, we will keep doing the stretches and Zoe may need some braces for walking later in life. We will just have to wait and see.
Cardiology- Zoe's heart is still functioning at the same impaired level as last April. So we will continue with the heart med and see them again in six months. Good news is that it is not getting any worse. We wish it would get better but hey, we can't have everything!
ENT- Zoe continues to have very small ear canals but the doctor does not feel it is affecting her hearing. It is still difficult to fully assess Zoe's hearing so we return every few months to give the hearing test a try. So far we know for sure that there is a slight high frequency hearing loss of the right side. So that is not too bad. She is borderline for a hearing aide in that ear but since hearing aides cause a lot of feedback, it might be better for her to just get used to not hearing as well out of that one side. Since the loss it mild, it should not affect her acquisition of understanding and using language.

Thursday, November 20, 2008

Zoe's Emergency Room Visit

After nine weeks of Zoe having a runny nose, coughing, not sleeping well, and seeing the pediatrician biweekly to check on her lungs, Zoe started running a high fever Sunday night. By Monday morning, Zoe was refusing to eat and insisted on being held constantly (not like Zoe at all). Her temperature was about 39.5 (that's 103.1 for the Americans reading the blog) and did not go down much with the advil and tylenol. So, back to the pediatrician's we went. The doctor guessed that Zoe either had a sinus infection or pneumonia. Her lungs were no longer clear sounding. She prescribed antibiotics and told us to follow up with her if she still had a fever in 48 hours. On Wednesday, Zoe still had a fever, still refused to eat, and was not acting like herself. It got a little complicated since we were at the hospital seeing orthopaedics and we did not want to have to go to the pediatrician's and then return to the hospital for a chest xray. So, we called the pediatrician and got them to fax through a requisition for the x-ray. That got a bit muddled because the secretary was too busy hanging stockings in the waiting room to bother checking the fax machine but luckily the orthopaedic doctor just added a chest x-ray to the requisition he made for her hip xray. In the end the pediatrician told us to go the emergency room where we found out that Zoe does have pneumonia in her left lower lobe. The best course of action would be IV antibiotics since Zoe was not responding to oral meds. However, Zoe is an extremely hard stick and they could not get in an IV. Rather than try a bunch of times and have the IV blow in the next day, they decided to give her IM (intra muscular) antibiotics, prescribe strong oral meds, and have us go back to the pediatrician's on Friday to have her lungs listened to again. They were able to get a blood culture so if the infection does not respond to the drugs they will know exactly what is growing in her lungs and the best meds to fight it.
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.

Saturday, November 8, 2008

Thank You Katie!

Katie and Zoe reading a book.

Our friend "Auntie" Katie slept over last night so she could help us out today. First, she got up with Zoe when she woke up which meant Gavin and I got to stay in bed together! This is the very first time we have ever been able to sleep in like this. I, of course, did not sleep much but it was nice to lay in bed. Zoe has an EEG (electroencephalography is the measurement of electrical activity produced by the brain as recorded from electrodes placed on the scalp) scheduled for Tuesday to check for seizures. Zoe woke up with a coughing fit at 6am and then after that I was thinking about her appointment on Tuesday so I found it hard to relax and fall back to sleep. Not to mention I am just not used to sleeping in any more. After we rolled out of bed at 10am (can you imagine!), we went to the eye doctor (both of us needed to be seen) and then out for a relaxing lunch. We returned to a very happy child and a clean house. We are so grateful for Katie helping us out like this. Zoe has been sick for the past eight weeks so we have had a lot of doctors appointments and sleepless nights. So the extra rest and relaxation was wonderful. To say we are desperate for help right now would be an understatement. We do not have any family in the area so we are completely on our own and this is the first time we had help like this. As a bonus, Gavin and I realized on the way home from lunch that today is our anniversary. So, it is nice that we got to spend a nice day together as a couple.
Ongoing Support
We do have a respite worker, Riann, who is fantastic and comes for a few hours every week. Most of the time we end up using the time to run errands, clean the house, etc instead of respite time. But Riann is a lifesaver and she is great with Zoe.
The daycare that Zoe goes to two days a week is another source of ongoing support. They are absolutely fantastic with Zoe. It is wonderful to have people in Zoe's life like her teachers and Riann who know Zoe, understand who she is and appreciate what a wonderful child she is. It is a huge emotional support to be able to share all of Zoe's small milestones with her teachers and Riann and to see the excitement on their faces since they too have spent hours and hours, weeks and weeks working on these goals.
Another support has been my "personal assistant" Melissa who makes appointments for me to see students at fancy salons which means I get to get a fancy haircut for a cheap price while she watches Zoe. And then we go out to eat. We always say we will shop too, but by the time I get the haircut and Zoe eats most of the day is done. It has been a huge help getting my hair cut, especially recently since Zoe is now working on developing a pincer grasp. Since she isn't quite there yet, she is working on pinching things and grabbing on to hair. She is learning to be gentle but it not physically capable of letting go yet. So, I decided to get a shorter haircut which makes my hair harder for Zoe to grasp. We are letting Zoe grow her own hair out so she can pull on it and learn to release. It looks a bit shaggy, but we have cut the bangs so it is not in her eyes.
Long distance support comes to me by way of my friend Amanda. Amanda lives in Pittsburgh and since Zoe was born we have alternated her visiting us one month and then us going there the next. Amanda is a wonderful listener and always up for a random good time. I can never thank her enough for all of the Papa John's she has exported for my benefit. I don't think she has ever declared those at the border.....

Melanie, Amanda, and Genevieve on go carts at the pumpkin farm. Hey- those bikes aren't just for kids!

Gavin and Zoe having fun on the slide at the pumpkin farm. Zoe was just a little too small for the go-carts.

Saturday, November 1, 2008

Zoe's Wish List

A few people have been asking for suggestions for Christmas gifts for Zoe. We thought it might be helpful to update people on where Zoe is at now developmentally so they know what type of toys she would be able to use and enjoy.
Zoe is doing really well and we are very proud of all of her milestones. She is now sitting for twenty seconds independently, rolling from her tummy to her back and her back to her sides, and able to stand with a lot of support. Zoe is now grasping toys and bringing them to her mouth to chew on. She enjoys wiggling around on the floor, rolling from side to side, and getting herself to her toys. Zoe's cognitive skills seem to be ahead of her motor skills as seen by her advance in communication skills such as the sign language and her understanding of cause and effect. It is a bit tricky to find toys that Zoe can physically play with that still keep her interested since she is now bored with baby toys that are easy to grasp. Here are a few ideas of some toys that would be easy for Zoe to manipulate but still keep her interest:
good old fashioned wood blocks- who doesn't love these?
Little Tikes tap-a-tune piano http://www.littletikes.com/toys/baby-tap-a-tune-piano.aspx
Little Tikes Discover Sounds Tool Box http://www.amazon.com/Little-Tikes-DiscoverSounds-Tool-Box/dp/B000067PUP
Tiny Love Activity Ball http://www.tinylove.com/toy.aspx?toyId=30
Tiny Love Bead and Blossom http://www.tinylove.com/toy.aspx?toyId=176
Signing Time Videos- we already have the Baby Signing time videos and Signing Time Vol one is a repeat, so any of the videos Volume two and past that would be great. Also, they have signing time board books http://www.signingtime.com/
There is a fiber optics therapy toy that Zoe really loves. It is called StarLight and can be found at http://www.flaghouse.ca/itemdy00.asp?T1=37656
Playskool Busy Basics Busy Poppin' Pals http://www.hasbro.com/playskool/default.cfm?page=browse&product_id=18095
Lamaze First Mirror http://www.liveandlearn.com/lamaze/firstmirror.html
We read to Zoe every day- so books are always great. Specifically, "And Tango Makes Three" is a cute book we read recently http://www.amazon.com/Tango-Makes-Three-Peter-Parnell/dp/0689878451
Clothes- any and all clothes are more than welcome since Zoe has outgrown most of her clothes recently. She is currently wearing size 18months (can you believe it!) so perhaps 24 months and up would be a good size. We do not look down on used clothes (or toys) so feel free to pass along your children's old cast offs or hit a thrift store.
We will be setting up a RDSP (Registered Disability Savings Plan) as soon as they are available for Zoe. We would love if anyone wants to help contribute to it (sorry contributions to Zoe's RDSP are not tax-deductible but the government does match some of the money you put in, so every dollar you put in is worth two or three dollars plus interest). Here is a link with more info: http://rdsp.wordpress.com/
Family gift idea- we really want to visit Edmonton next year but with Gavin stopping work in January, our funds are getting tighter. If anyone wants to donate towards airline tickets that would be wonderful.
All of the toys can be found at any toy store except the StarLight Therapy toy. Cheaper versions can sometimes be found elsewhere, but Zoe has torn out the fiber optic bands because they were not attached as firmly as the one from Flaghouse.
We hope that people find this list to be helpful. We are not, in any way, trying to tell you what to get Zoe (or saying that you need to get her a gift at all). We just recognize that buying a gift for Zoe is a little different than buying a gift for a typical almost 2 year old. All of the toys we put on this list have therapy goals in mind. With Zoe's visual impairment, it is important to use toys that are not overstimulating visually but are brightly colored and attract her attention. Just writing this list out was a little sad for me because I look at the toys I would get for a typical 2 year old and those are way beyond what Zoe can do right now. A close relative mentioned going into a toy store and seeing toys that Zoe would enjoy but noticing the age range on them and becoming sad and needing to leave the store. We know exactly how this feels.
But then we focus on the fact that this time last year Zoe was wearing 3 month size clothing and just starting to reach for toys. Now, she has such a good grip that we have to teach her to be gentle with our faces and hair. It is amazing how much she has grown in the last year.

More pumpkin fun

Zoe on her very first hayride with (from left to right) Melanie, Amanda, Gavin, and Genevieve.
Zoe showing off her pumpkin hand.

Zoe excited about playing with her pumpkin.

Zoe eats her very first food by herself! Zoe is now putting toys in her mouth and holding them there to chew on. She also fed herself grass and now pumpkin. We are looking forward to her eating more edible items soon.

Signing "More" and "Tired"

The quality of the video is a bit off but we are going to post them for now and then try to fix them later. Zoe's sign for "more" has become much clearer in the past few weeks and she is starting to get quite insistent when she wants more of something.

Wednesday, October 29, 2008

a smile and a stink eye- Halloween fun

Here is a quick video of Zoe enjoying carving her pumpkin at our friends Amanda's on the weekend. She loved it, and is soooo cute in this video (Zoe, that is-not Amanda)



I don't know what I did to deserve that stink eye, but Yikes! I love how expressive her face can be, going from that wide grin to that scowl in just seconds.

There will be more pumpkin/Halloween pictures to come- we just need to pick out the best ones. It's a hard choice- they are all super cute!

Sunday, October 19, 2008

Zoe's great grandmother

Zoe's great Grandmother (Gavin's grandma) died this weekend, at the age of 91 (I think). She had been ill a long time, so it was not unexpected, and apparently she went peacefully in her sleep. She lived in Davidson's Mains in Edinburgh until she was around 77, in the same house my dad and two aunts grew up in. The first memory I have is from the garden of that house when I was two. For the last 14 years or so she lived with my aunt Muriel, uncle Walter and cousin Zoe in Surrey, England.

We were lucky enough to get over there last year with our Zoe (or wee Zoe, as she is known to that side of the family) last year. Zoe was 6 months old at the time. My grandmother was still in somewhat good health (though rapidly declining) and she enjoyed visiting with her great grandaughter (her "bonny wee babbitty") immensely. I can't say I knew my grandma well, owing mainly to the fact that Scotland is quite a long way away from Canada, but I am very glad that she was able to meet Zoe and that they could spend some time together. It meant a lot to everyone involved, I think (though Zoe looks a little mystified, to be quite honest).

This video is, I guess, my tribute to my Grandma. She was a spunky old lady- I think there can be no argument about that. She lived a grand old life, and I'll miss just knowing she is there. I'm posting this video in the hope my family can see it, and remember how happy Grandma was to see her "wee Zoe".

The music is "Flower of Scotland"- this version by a band called Runrig. The other lady in the video is my cousin Zoe, who is only a few months younger then I am and a charming young women who was also absolutely thrilled to see "wee Zoe".

Tuesday, October 14, 2008

Pictures from 2nd Annual 1P36 Conference in Boston, MA

Sequoya playing with Zoe's FP rings. These were a big hit at conference. It was interesting to see how the kids played with the rings. All of the kids insisted on putting the smallest ring on first and then stacking the bigger rings on top of it.

Amaya and Abby

Amaya and Emma


Nate, Melanie, and Whitney riding the T on the way to the aquarium. Whitney kept getting so excited, she would clap her hands.

Elisha, Sequoya, and Carl. Someone on the train recognized that our kids looked alike and asked us if we were going to a family reunion.

Kim and Amaya on the T. Amaya kept getting so excited she would flap her hands.

Genevieve and Zoe looking at the Jellies at the Boston Aquarium. Zoe did not pay much attention to most of the fish or the penguins since there was not a lot of contrasting colours. She did, however, love the jelly fish and kept trying to grab them.
These are just some of our many pictures taken this year at conference. We took some great footage of Zoe playing with the other kids, but unfortunately it turned out too dark since we took the video on our still camera. We are really glad we got to go again this year. We enjoyed seeing old friends as well as meeting new families. As I mentioned before, going to conference is a bit emotional since it brings forward the reality of what we will be facing with Zoe. However, the reality of the families we have met has been much less bleak than the reality we read in the articles when Zoe was first diagnosed. And we have learned so much from the other families on the list serve. So, we feel very lucky to have this support. If you want a run down of the conference speakers, check out Whitney's blog- the link is on the right. We look forward to going to conference again next year. We have decided that going to conference every year will be one of our family vacations. Although it is difficult at times to get that dose of reality at conference, it is so important for us to keep up with other families going through the same things as we are. There is such a bond between the 1P36 families since we are all in this together. We invite any of our family and friends to join us next year (or if you can't make it next year, you are always welcome) in Indianapolis the second weekend in August.

Sunday, September 28, 2008

Zoe's labour story

After a healthy and uneventful pregnancy (we had one small scare when they were unable to see her bladder and thought she had hydronephrosis but we were never very concerned with it), I prepared to leave work for a year. Being from the States, it felt very odd to prepare for a year maternity leave. None of my friends had ever done it. It was always return to work in a three months or leave your job (some friends were not even lucky enough to get the 12 weeks off). Gavin and I were more than prepared. Our hospital bags and carseat were ready to go since week 36 (it was a good thing we installed it at that time since if we had waited any longer, I don't think I would have fit in the car to help with installation!) I was excited to leave work and to tell the truth, I was unsure if I would truly return in a years time. A big part of me always wanted to be a stay at home mom and was hoping Gavin would secure a permanent position during my leave time. All of that was a year off, so I just focused on getting ready for the birth.
So I worked until three days before the baby was due and began having contractions on and off soon after I left work. Silly me kept thinking "this is it!" especially after one event of contracting for twelve hours straight with the contractions happening closer and closer together. However, the contractions would eventually stop and I began to realize this is not it. I had to start going to the midwife pretty regularly (every few days at first and then every day in the end). The midwife told me I was already a few cms dilated and so I really began to think "this is it!" I come from a very large family with lots of births every year and they are all healthy and uneventful for the most part. So, although I knew about getting induced or C-section, I never thought those things would be part of my baby's birth plan.
And so the week passed with me going to the midwife for stretch and sweeps of my cervix (just about as comfortable as it sounds) and us trying every trick in the book to convince the baby to come on out. I even bundled up (remember this was February in Canada) a couple of times a day and waddled around the neighbourhood until my feet were numb hoping that the activity would start labour. Now we know that kids with 1P36 lack the muscle tone to initiate the labour process. Although my body was doing its job- I was 4cm by the time I was induced, Zoe was just not programmed to come out yet.
After I was ten days over due and feeling pretty anxious, I went for an ultrasound to see how the placenta and amniotic levels were doing. We knew the baby was fine since Zoe was always very active and kicked me non-stop. We also had our own stethoscope and listened to the heartbeat several times a day. So we assumed that all would be well. At that ultrasound we found out two things. One, the baby was very small for its gestational age- they estimated it was six pounds three ounces. Two, the baby had something seriously wrong with its heart. The heart defect they thought the baby had was fatal and it was most likely not going to survive the birthing process. We were told to go home, relax, enjoy the weekend, and then show up on Monday to be induced if I had not gone into labour before that time. Because the baby was so small, they wanted to give it as much extra time as possible to build fat and strength before inducing me. The good news was that the placenta and amniotic levels were fine, so for now the baby was in the best place it could be.
To say we were devastated just doesn't really explain how we were feeling. After having so many normal ultrasounds where the baby was a perfect size, we were confused. Why it had suddenly stopped growing? Was it the heart defect? Is that why the baby was so small? If the baby survived birth, it had a 75% chance that it would die in the first few days. We didn't know what to do. Do we tell people? Do we just "relax and enjoy our weekend, haha?" In the end we decided not to alarm our families. Since we weren't 100% sure of what was going on, we decided to hold off. We spent most of the weekend crying, listening to the baby's heartbeat while crying, eating while crying.....you get the picture. We also continued our attempts at inducing labour.
Monday morning we showed up for another ultrasound and the tech was the same one from Friday. He looked horrified and said, "Why are you still pregnant? You should have been induced." Then the tech called in someone else who happened to know someone at Sick Kids and was able to set up a fetal echo for us. So, we would be able to find out exactly what was going on with the baby's heart before birth. That way, if birth would be too much stress on the baby's heart, we could plan a C-section. We had five ultrasounds that day and heard a few different hypotheses thrown around as to why the baby was small and what was wrong with the heart. The fetal echo showed right ventricle hypertrophy (thickening of the heart muscle) and we were told that at most the baby would spend a few days in the hospital and would be fine. We were overjoyed by this news. We now know that this was partly correct, but Zoe had five other heart defects along with the hypertrophy. The last ultrasound of the day we were able to see the baby peeing. It was kind of cool, despite the fact that we were so exhausted by that point.
Meanwhile, there was a gasket in an OR room that blew. What this meant was that the hospital we planned to birth at, the hospital my midwife had rights at, was not inducing anyone. When you start an induction, there is always a chance of needing a C-section. So, we were not able to start induction that Monday. People kept reassuring us that the placenta and fluid looked good which is why they did not consider the baby at risk so they could put us off another day or two. Someone mentioned returning Friday for induction and I think I shrieked at them "Are you kidding me!" Yes, I knew the baby was technically fine, but I also knew the risk of staying pregnant past 42 weeks. Our midwife (I can not say how glad we were to have midwives at this point and later) advocated for us to start induction on Tuesday. So, we left the hospital on Monday with a plan to return Tuesday. As a last ditch attempt at starting labour, I took caster oil that evening. The only thing it succeeded at was cleaning out my bowel! No contractions.
Tuesday we returned to the hospital with our bags packed and feeling quite anxious to get this all started. We wanted the reassurance of seeing that the baby was fine and to get a proper echo right away to find out what was really going on with the heart. We ended up sitting around the hospital all day Tuesday and were told to return at midnight (some emergency pts had shown up and therefore we were bumped).
We went home for a few hours of sleep. Returning at midnight for the induction was surreal. We parked at Sick Kids since it is right across from the hospital I would give birth at and we now knew that the baby would be transferred to Sick Kids after birth. The hospital was deserted and there was so much snow on the ground, I felt like we were on a movie set. They lock the doors of both hospitals that face University Ave which meant that a normally 5 minute walk took us about 20 mins. I was jogging and sweating up a storm and thinking "If this doesn't start labour, I don't know what will!"
After finally getting settled in our room, a doctor came to tell us that the induction would not be starting at midnight. The reason we were given is that all of the NICU beds were taken and if the baby needed any resuscitation after the birth, it would be very dangerous without the NICU bed space. At the time we were very annoyed at this reason, but given how Zoe did need resuscitation and the NICU bed after birth we are now very grateful for this doctor for being so careful. At this time (and earlier in the process) we were given the choice to go to another hospital. We loved our midwife and felt completely comfortable with her care. We did not want to switch hospitals because she would not be able to follow us. So, we decided to get some sleep. Even our midwife slept at the hospital with us that night. She did not want to miss the call if they suddenly gave us the green light to go ahead.
The next morning (Wednesday), our midwife advocated for us to move into one of the swanky new birthing suites. It had a tub room, TV, etc. Not that we cared at that point. And because I was hooked up to pitocin the whole time, I wasn't able to walk around much or use the tub room. The extra room did come in handy when the repository therapist and doctors had to rush in when Zoe was born.
At noon on Wednesday, when I was 42 weeks plus one day, the pitocin was finally started. It finally hit me that I was going to be induced after all and I cried. I know, how could I just be getting it right? I guess up until that point I still hoped that I would go into spontaneous labour. I did not want pitocin because I did not want an epidural or pain meds. I decided to go without both despite the pitocin and I can tell you that was not a good idea. I know labour is never comfortable or much fun, but pitocin without drugs was more awful that I thought it could be. I have a high pain tolerance. Anyway, I will spare you the gory details. Many of us have been there, done that. I can say it was way more painful than I counted on but it made it all worth it in the end when I overheard a NICU doc say that it was a good thing that "mom didnt have any drugs on board because this kiddo was born so flat. Who knows if the kid would have made it if her apgar was any lower." And so, the pain was worth it because although we thought Zoe was dead when she was born, she was not and who knows if drugs would have caused her any problems. Or maybe I would have needed a C-section and I can't imagine coping with post-partem recovery of a C-section on top of being by Zoe's side in the NICU.
So that is the story of Zoe's labour. There was some other random things I was barely aware of since I was in so much pain. At one point there was a chemical spill and so the pitocin had to be stopped. The plus side is that I was able to unhook from the IV and get a hot shower which felt really nice and helped with the pain. Also at one point, a friend from work brought us some lunch (had I called her? I can't remember) but it was really nice of her to bring us food. So, thank you Cathy!
We will post more about Zoe's birth story later. I just want to say a huge thank you to my midwife, Robin. The back up midwife, Joyce. And the midwife student, who I can't remember her name even though she got up close and personal with me by holding my leg during the pushing faze (it is amazing how you don't care who sees you at that point!) Our midwives were awesome in all of their support during the pregnancy, labour, and after. They even got us tea and toast while we were waiting to hear how the baby was. And they visited us and Zoe in the NICU several times. I don't know any obgyns who would have taken such care of us physically as well as emotionally.

Friday, September 26, 2008

Can I get some more attitude with that sign?


I was trying to get some pictures of Zoe doing some signs so I decided to start with "all done." Here is a picture of Zoe saying "all done" with a whole lot of attitude (in her defence this was probably the 20th picture I had taken trying to get her saying a clear "all done"). I think she was saying she was all done with our photo session because she refused to do any more signs for the camera after "all done." Perhaps I will start with a different sign next time. Her all done is definitely nice and clear in this photo. And anyone who speaks sign language will know that the facial expressive part of the word is just as important as the sign itself!

Wednesday, September 24, 2008

Bonjour Montreal!


Inspired by my sister-in-law, Jennifer, who goes away two weeks a year without my brother or their four children, I decided to celebrate Zoe weaning herself by going to Montreal with my friend Amanda. Anyone who knows what a challenge it was (for me and Zoe) to breastfeed will agree that I definitely deserved this trip. (If there is a 1P mom reading this and you want tips on breastfeeding your child, please feel free to ask. I did not find any helpful literature and I had only met one other mom who was able to breastfeed her 1P36 child and she reported that her child nursed much like her other children and therefore did not have the issues that Zoe did with feeding).
This was the first time I was ever away from Zoe for more than ten hours. I wasn't sure if I was going to break down crying, but I have to say I ended up having an awesome time. It was so nice to walk around the city with just a tiny purse and be able to do whatever I wanted. Amanda (being the great friend that she is) was up for anything so we just did a lot of walking around since it was such a gorgeous weekend. I did think of Zoe a lot during the weekend (especially when we got completely lost in the woods and I wondered if we would ever find our way out so I could see my baby again!), but I was able to enjoy my time away. Although I felt just as tired physically when I returned, I felt renewed mentally. I think in a lot of ways, Gavin and I are both so fatigued emotionally/mentally more than physically. (Although we are pretty tired physically too these days!) Our trip to Boston for the 1P36 conference was wonderful, but there is an emotional piece to seeing the other kids too. It is wonderful to see how well some of the kids are doing but it can be tough to be reminded about how far we have to go and what Zoe's future may be like. It was great to see everyone though, and as soon as we finish going through the pictures, we are going to post of few on the blog. 1P36 families are sharing pictures on the listserve as well.

Saturday, September 20, 2008

Fun fun colonoscopy stuff

This is Gavin's colonoscopy, not Zoe's. I'm clear for another 3 years, so all is good. Genevieve brought Zoe with us to the hospital and waited while I had the procedure. It was great having them wait with me and then being there when I woke up. She is such a good girl (both Zoe and Genevieve) - I'm lucky to have them both. Here's a couple of pictures of Zoe helping me wake up. It was so nice having Zoe there, though to be honest I don't remember much about it. Those drugs they give you are pretty effective! Not like the old days, I tell you.








Uncle Angus visits

Hey all,

We have had a busy time recently, so sorry for the lack of new updates. Uncle Angus (Gavin's brother) visited a couple of weeks ago. He is driving his motor bike from Calgary to Newfoundland (or as far as he gets), so hopefully he will have a good trip. Here is a picture of me enjoying some "family" time with my uncle.


While he was here he helped Daddy stain the front and back decks- we are still keeping the rest of the fence for him though on his return trip. He also helped break out Daddy's new reciprocating saw and prune (i.e. chop down) a huge shrub thing out front- Mommy, daddy and Angus all had a turn. Actually, I don't think it looks much better now, but maybe come spring?

We also just got back Monday from the 1P36 conference in Boston. Wow, that was a long drive! You can check out my friend Whitney's blog on what happened at the conference- her Daddy Nate is on top of things, man! So mommy and daddy are feeling kind of tired this week, and a little physically and emotionally worn out. Mommy is on a trip by train to Montreal this weekend with auntie Amanda (not an actual auntie, but close enough- she loves me (and mommy and daddy too, I guess) soooooo much). Anyway, they are off having wacky adventures no doubt, and daddy is here at home getting to wash my poopy diapers! Lucky Daddy.

Anyway, the conference was great. We got to see a bunch of my 1P36 friends, go swimming in the pool 3 times, see the fishes and penguins at the aquarium and lots of other fun stuff. More updates later- I will post some pictures when mommy brings the camera back from her trip.

That's all for now. I had an appointment at anesthesia clinic to get ready for my MRI in a month or so. There is some debate on getting IV access (I am a very tough stick) and safety/benefit versus risk etc so we are now waiting for one doctor to talk to another doctor then get back to us to hear if it is on. We'll see.

Love to all.

Zoe

Monday, August 25, 2008

Some more stuff Zoe likes/an excuse to post more cute pictures!

Zoe likes hanging with her 1P36 buddies Shelby (almost 3 1/2 yo) and Matthew (2yo). We went to Matthew's house for a delicious dinner last Saturday. Being with other families who know exactly what we are going through is so helpful. This was the first time we saw Matthew out of hospital, so it was great to see him in his own home and looking so well. Shelby has been very sick recently, so it was also great to see her looking healthy. I had to fix the red eye, so unfortunately you can not see Shelby's beautiful blue eyes. It is amazing how much Zoe and Shelby look alike! We got Zoe's high pigtail idea from Shelby's mom- it works well for our kids that still rub their heads back and forth so that regular pigtails quickly fall out.


Zoe also likes eating (most of the time). At her 18month check up this past week, we found out that Zoe has gained another 20 oz these past six weeks. Zoe's current weight is 8.1kg or 17lbs 13oz! Way to go Zoe!


Zoe loves her ball that she got from her cousin Lucy last Christmas. When Zoe first got this corner chair, the ball was one of the first toys she played with in the chair. Daddy was so happy that Zoe could finally play ball at 11months old that he got a little misty eyed (daddy is such a suck). Zoe especially loves it when the ball whacks her in the face (crazy girl!)


Another thing that Zoe really loves is vestibular stimulation. Any time Zoe can be bounced, thrown in the air, patted very firmly, or swung she is happy. We use the hammock to give Zoe some stimulation time. Initially, Zoe was unsure of the hammock and would cry, but now she really loves it. Vestibular stimulation is supposed to be good for her cognitive and neuromuscular development. Zoe thinks, "Who cares, it just feels good!"