Merry Christmas Eve to all, and to all a good night.
Wednesday, December 24, 2008
Merry Christmas Eve to all, and to all a good night.
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
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.
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:
Sunday, December 21, 2008
Monday, December 15, 2008
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.
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
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.
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!