Just thought I should update!

Not much to say, we have appointments we are waiting for and things seem to have been put on hold a little till the new year. Now we have to concentrate on Christmas. We have no results from the holter moniter yet, I am assuming that soon we will get a call from Cardiology with a follow-up appointment. Dominic's sedated ABR (I think that stands for Auditory Brain Response....or something like that) is going to be on January 7th. He should be seeing the pediatrician sometime in January as well where we will talk about a possible diagnosis of Apraxia. I still have not heard from the family doctor regarding the tax benefit form. This is very annoying. I am going to call and check again! So much for wanting the money for christmas. Anyway Dominic is doing well and trying new words and loving pre-school. He is getting to be such a big boy, I can't believe he starts JK next september or that it has been 5 months since the Fontan. Wow! Time goes so fast.

Thanks for checking in!

Jenaia

The Echo is behind us....Holter monitor this Friday!

So the echo went well. I was still a little frusterated as the doctor kept talking about how Dominic was sick and snotty. He was not! Dominic has a noisy airway and they seem to conclude that this means he is sick and they wouldn't listen to me saying he is fine....this is normal. When the echo was done with I came back into the room and the doctor tells me as if I didn't know "He was fine....as soon as he was sedated the noisy breathing stopped" I really felt like saying "told you so". Anyway they said that his function looks great, no leaky valves or anything. She did say though that they probably wouldn't close the fenestration (the hole they left in the conduit) for another year or two. I was under the impression that it would only be at 6-12 months post op. I don't know why she was saying different, it is possible that she didn't really know. I found that they really didn't know much about single ventricle kids up on the sedation ward. They were very interested in Dominic though!

It looks like Dominic's brain stem test will be at the London Children's hospital in February. This is the test where they are checking to see if what Dominic is hearing is getting to his brain. I have now been introduced to another medical issue that causes speech problems and that is called Apraxia. It is where the person knows what they want to say but either the one part of the brain is damaged or not developed correctly and they have a hard time saying what they want to. The description sound very similar to Dominic and the speech therapists that work with him have said that it is a possiblity when I mentioned it but they can not diagnose it. I will be asking the pediatrician. This week we go to London for a consult with the ENT who will be doing the brian stem test, I may ask him about it aswell.

My family doctor did say that he would fill out the form for the disability tax benefit but he was not that promising and he said for walking and speech which would mean that it wouldn't even have been any problem until probably two when these things actually become issues. From what all the other heart moms with single ventricle babies are saying, Dominic should have been getting this since he was born. I am going to send the doctor a note and explain why we need it and what to write on the form. I really hope he gets it filled out soon. It would be nice to have it all done and some money to us before christmas.

Anyway things have been crazy busy around here. Dominic is getting his holter monitor on Friday at 2:30 so he will have to wear it for halloween, I don't know what he will think about this. I guess we will see! I changed the appointment because I didn't want him to miss any school.

Thank for checking in....I will keep you up to date on Dominic's upcoming appointments.

Jenaia

A Stressful week of appointments!

Tuesday we had speech in the morning and the family doctor in the afternoon. Wednesday we had the scheduled sedated echo that didn't happen and Thursday speech again. Speech went fine both times, actually he did really well. On Tuesday he went without me and he was fine. I told him that I wasn't going to be coming in and he seemed well prepared for that.

The echo didn't happen because Dominic was as fussy as possible and coughing like crazy with a runny nose. He does seem to have a bit of a cold that was not bad until that morning. He also regularly coughs at night and a lot in the morning and needs a drink the instant he wakes up. He was not allowed to have a drink because of the sedation so his cough was bad. They listen to his chest and said there was no way they felt safe sedating them. I would not want him sedated if it wasn't safe, but even the nurse practitioner agreed that the way he sounded was the way he sounded in July and he was not sick then. He has a very noisy upper airway. Since they all saw that this is his norm they decided the echo would not be done in the echo labs at the clinic and want to do it upstairs. So they send up for a "Pre-Op" appointment instead to prepare us for a stronger sedation with an anethetist present. I don't like the Pre-OP word. Anyway this new echo appointment is October 20th. They also want Dominic to wear a holter monitor for 24 hours. I don't actually know much about these or why they are doing it on Dominic. Maybe you other heart moms can help me out here? Anyway so we go to get that on the 23rd and bring it back on the 24th. So it looks like 3 trips to Hamilton and back that week plus speech twice again.

This leads me to the appointment we had with the family doctor on Tuesday. I had brought in the forms for the disability tax benefit for Dominic hoping he would fill them out and we would get some back pay an everything. He basically said to me that just because he has a speech delay does not meen he is disabled....actually this is exactly what he said. He added...."Lots of kids have speech delays". I was quiet annoyed because Dominic's is not typical and not going to go away anytime too soon. Not only that but it is not just the speech delay. If we can have anywhere from 2-5 appointments in a week, how am I suppose to hold down a full time job, let alone a part time one. As far as I am concerned if you can't just go to work because of your child then you should be qualified. He told me that he can't lie on the form or he will lose his liscence. This bothered me too, because I am an honest person and he should know that. I was not asking him to lie. Anyway I did end up getting him to say that maybe he will be okay to get it if they fill it out saying he is significantly restricted in speech and walking. Basically they need to either be Markedly restricted in one area or significantly in 2 areas. He said we could use walking as well because Dominic does not have the energy to walk any sort of distance. I don't really care how they fill it out, I just really think we should be getting it and it frusterated me after the week I had and the week I will have in two weeks, that he would try to convince me we won't qualify.

Anyway I am feeling a huge reminder of the Dominic's heart defects and feeling a little stressed about it in the pit of my tummy. I don't know if it is worry with these tests coming up or worry that I can't afford all of this. 3 trips to Mac is expensive. I can hardly afford to stay home. I really hope we can get the benefit.

Wow blogs are great for venting!

Thanks for reading!

Jenaia

Finally some real tests!

So we had the OT come out to observe Dominic. She said that although his play is quite functional (this is what she saw) he is constantly seeking sensory stimulation. The funny thing is in other environments he avoids it. She even pointed out how he comes down the stairs on his bum is a sensory thing....he always does this, very rarely walks down the stairs. She says he definetly has sensory issues and because of the speech delay as well she thinks we should go through with an assessment for Autism. I truly don't think that he has it, but I will go through the assessment. It doesn't really matter that much to me, if he is labeled with Autism he will get the help and if not atleast we have eliminated the option. The same day that the OT was here the audiologist from the clinic we went to called back and told me that he thinks he has found someone who will do a brain stem study on Dominic. This is what I wanted from the beginning. It will be done at London's children hospital. It is not booked yet, he had just called to get my permission to send the referal to the audiologist that would be able to do it.

I registered Dominic in a preschool program called alphabet soup. He will go on Wednesdays and Fridays from 9:15-11:30. This was half the price of the daycare they had chosen for him. They were going to set him up with an early intergration program. This basically means someone helps and observes him while he plays at the daycare and assesses him the whole time he is there. This is basically to prepare a child for kindergarten, and make sure they have all the necessary aids they need in school. I think this is a great idea and although Dominic will not be going to kindergarten I am sure the info would have helped me and it would have been nice to know there was someone who was actually understanding Dominic there. Unfortunatly I don't think this can happen at the preschool program we registered him for. We had to go this way though because it was half the price, the important thing right now is that he has time with other kids in order to help develop his speech and social skills. I figure we will see how he does and if this works out fine, continue to do it. If not maybe later when we may feel we can afford it we can put him in the other daycare.

Anyway it looks like we may get some answers soon even if they are just to eliminate options. Dominic goes for his sedated echo on October 8th as well. Please pray the runny nose and cough get better so that we can have this done. They have not really gotten a very good look at his heart since the surgery since he won't stay still.

Anyway thanks for checking in!

Jenaia

Why does it seem like it is so hard to just get the help I want?

Hopefully this week we will get it all sorted out. The test Dominic had done turned out not to be what I had thought and was just a hearing test. His hearing is fine...although I already knew that. The man said he would look in to doing a brain stem test, but he didn't sound very promising. He said they don't normally do this test this young unless the hearing test comes up with something. They were also concerned about sedation and his heart...they weren't sure where they would have to do the test. I think it is all very annoying. I want them just to do it, so that I can know if auditory processing is his issue. The OT is coming here tomorrow during school time to watch him in his own environment. She says that she thinks we should go through the autism assessment although it may seem like he does not have it....he could be high on the spectrum. I don't know what I want to do about this. I feel quite strongly that Dominic does not have autism (and it is not denial). I just don't feel that he really fits into the spectrum, I think it is more sensory or at least auditory processing problems. Autism is the popular thing now....although I know it is way too common, I just feel like they want to assume it first of all and don't look enough into other disorders. I just want to make sure I know what is the best way to teach him. Anyway hopefully the diet will help with this a little. I am starting to think he has stopped his throwing. Dominic was throwing obsessively. I mean throwing random things across the room at random times with no reason....all day long. I haven't been noticing this so much lately and I am wondering if this is the diet, he doesn't seem to be empty things constantly either. I don't know though because he still can't seem to play by himself, still puts things in his mouth all the time and other sensory behaviours. Maybe the diet is helping some though. I can't really say I have noticed any differences in his speech though.

We met with child care services to see what subsidy we qualified for and apparently we don't qualify for anything. It is very frusterating, we waited over a year on a list for them to tell us we don't qualify. So if we want Dominic in pre-school we are looking at 20 dollars for a morning. I would prefer he goes three mornings. I am just hoping that with driving the bus we can afford it. I am looking for other options, but I do really want him out with other kids socially and it is hard to take him to launch pads and stuff when I am schooling Jodi Lin at home. I also think he needs to be places without me. Sometimes I hate that we make more money now. The government has taken so much away and we are not approved for stuff we would have been before, plus Paul pays so much for gas to get to work. We end up having less money then before he had a good job. Oh wonder we have so many people living on low incomes.....there is not much of a reason to get educated and get a new job. I am sure one day we will notice more of an income but it is just so frusterating. I know preschool will be good for Dominic and I feel he needs it, so do the people who work with him, but because of our income we don't qualify for help. They have no idea how much money we actually have to spend. Sorry for all the venting....although isn't that what a blog is for.

Jenaia

Test tomorrow!

We have not been asked to go back for bloodwork yet so that is good. Dominic's levels must be better. Tomorrow he goes for the test in London where they are going to look more into his hearing and understanding. Apparently all this test is, is them asking him questions and having him point. This kinda bothers me because I know he has done well on this type of test before. I am happy he does well, but still concerned about his understanding and his ability to form words. I do feel he gets lost very easily in explanations and commands, I don't know maybe it is just his attention span. I just don't feel like he understands other things that most three year olds would understand. Well I guess we will see, if they see a concern they will test further and apparently they are really good at explaining the results to you that day so I can ask about anymore concerns if the test doesn't resolve my worries.

Dominic has made it to the top of the list for daycare subsidy. He was put on this list because of his speech delay so we just need to pick the preschool we would like him to go to and hope they have openings and that we can afford what we have to pay of it. The subsidy is a percentage based on income. I think it would be great for him to go a couple times a week and get the social time he needs and Jodi Lin and I can have some time together to do school.

Anyway so that is how things are going right now with Dominic. Heartwise he appears to be good although I don't believe his sats could have gone up much....he still looks just as off colour as he always has. I guess we will see at his echo on October 8th.

Thanks for checking in,

Jenaia

Hopefully at normal level!

Well the missed dose seemed to have done it. He actually missed the dose the next night as well, as no one had called me to tell me the results of the blood test and what to give him. I talk to them yesterday at 11:00am and they said his levels were in a therapeutic range so to continue giving him 3mg a day. So I started right then. Dominic's dose is now back to the morning which I prefer. We have to go back Monday for more blood work and hopefully the numbers are still in normal range.

Dominic also gets back in speech regularly next week. He will start going Thursday's at 3:30pm and we haven't scheduled the other day yet, but he will go twice a week.

Sedated Echo on October 8th (my birthday of course), he always has to hit the special days.

Anyway all else is good!

Thanks for checking in,

Jenaia

Darn INR levels!

So I don't know if it is because he was sick last week or because of the diet change but Dominic's blood thinner levels are a lot higher. They were at 1 the last time they checked so they increased his dose to 3mg. I guess ideal is about 2.5, well today he was 4.5. So we missed his dose tonight and bring him back for another blood draw tomorrow. Poor kid....he hates them! The doctor doesn't seem to think that the diet would effect his levels this much. I am bringing in the vitamins that he is on tomorrow....so they can make sure there is nothing in them that would effect his levels. They told me to watch him carefully and make sure he does not hurt himself as the high levels mean his blood is quite thin.

Please pray this gets sorted out! Also a fellow heart mom and friend from facebook has offered to send me her INR machine. Thanks Chrissie! This will mean that we will potentially be able to test his levels at home with a finger poke. It is very similar to diabetics testing their blood glucose levels. Pray that this works out and we will be able to stop all the trips to Mac soon.

Thanks for checking in!

Jenaia

I guess I am not much of a blogger....I will try harder!

Sorry for the delay in updates! I think most people who are checking have other ways of staying updated on Dominic anyway. Dominic is doing great, besides the frequent blood draws still for his INR levels (because of blood thinners). He has even potty trained since we got home...infact still in that 6 week recovery period. we had to lift him by his legs to put him on the toilet (lol). He has done great though and is even trained through the night despite the fact that he takes water to bed. He does still have the odd accident as a result of waiting to long but only during the day. He is yet to wet the bed (knock on wood).

We have all been sick off and on for the last week, but we seem to all be getting better. I honestly think Dominic had it the best out of all 4 of us. How does that work? Luckily he takes after his sister and has one heck of an immune system despite his half a heart.

So Tuesday we start homeschooling as well as our new diet. I have decided to go Gluten free and dairy free and bring Dominic along with me. I am going to be more cautious of what Jodi Lin is eating as well but I don't think I will be quite as strict with her. I don't believe she has an issue so much with dairy and gluten as with additives and preservatives. I think that in the long run this will be healthy for all of us. Pray for us though as this is a lot to take on all at once....along with the homeschooling.

I can't believe I am actually going to do it. Ever since Jodi Lin was old enough for JK, I always felt that I needed the break. Now as grade 1 draws near I know I don't want her gone all day everyday. I want to be the one who leads her and teaches her. Jodi Lin needs some more time with me. Dominic has taken so much of my attention in the last few years that I know she feels left out. Of course Dominic is still going to get my attention but now I will be spending so much quality time with my little princess as well. I am really looking forward to it and I believe she is too. Dominic will be doing some school as well....as much as he can take. He does seem to like being included and likes to work in workbooks.

Good news about Dominic is that I was able to set up some testing to look further into his lack of speech and figure out what maybe going on. I have been getting frusterated with having no explanation to why he is so behind in that way....(besides surgeries). I know that surgeries can delay them....but Dominic has not really spent that much time in the hospital. I am more concerned about the surgeries/bypass/ventilator causing actual damage that is make speech much more difficult for him. Basically we are looking into whether what Dominic is hearing is getting to his brain correctly. Now Dominic can understand and can hear but he seems to have a more difficult time processing what he hears and an even harder time relaying it back to you. He continues in speech twice a week and will soon be seeing OT as well. I haven't quite figured out what I am going to do with Jodi Lin during these time...but hopefully it will get figured out soon. Dominic's communication is coming along though and we are seeing even more of his character coming out. We are encouraged to teach him more signs though as he is very hard to comprehend....specially for someone that does not live with him.

The heart picnic was last weekend and we all had a blast. Thank you everyone who came and Joanna so much for your help. We had food provided by Maple Lodge Farms and payed for by Cardiac Kids. Thank you to both of them. Maple Lodge Farms even brought along a surprise....their nascar race car. The kids all loved it...it was very cool. I will have to post some pics later, I need to do some editing first.

I will keep you all updated on the testing and results! I am considering starting another blog (that I may actually use) all about how the diet and homeschooling are going. I will post a link if I go ahead with this.

Thanks for checking in!

Jenaia

Here is another pic of Dominic from Canada day....only 2 weeks post op. My little Spiderman!

We are Home!

We still need to get his coumadin (blood thinner) levels right but we can do that as an outpatient at McMaster. We will be back to Sick Kids sometime next week for post-op. So I will be looking for all who are going to be there on that day. Now here comes the job of keeping Dominic safe from hurting himself. He can not be picked up under his arms or pulled by his arms for 6 weeks and is suppose to avoid any blow to the chest for 3 months. We also have to be more careful now as he is on the blood thinners.

Dominic is happy to be home although yesterday he didn't want to go home....he wanted to stay at the hospital. He ate like 3 bowls of cereal for breakfast, so that seems to be back to normal. He is still not drinking a lot though, but seems to be hydrated enough. Can't believe the Fontan is behind us!

Thanks for all your support and thoughts and prayers. It truly helped us get through this hard time. Please keep praying for the other heart kids, Wyatt and Patrick as well as Cole and Max who is having his Fontan today.

Thank you,

Jenaia

Update for June 23/08

I am sorry I have not updated. It has been hard to get to the computers...specially on the weekend. Dominic moved to his own room on Thursday night. The same day he moved upstairs. He has been doing well. He just came off of oxygen yesterday. He was needing it for night time. He is still draining out of one tube, but it is really decreasing. For those heart moms out there....he has tested negative for Kyle(or whatever it's called). Right now we are waiting for the draining to stop and for the docs to figure out the right dose of coumadin(blood thinners) that he needs. Dominic is not eating or drinking well...which concerns me but the doctors are not making a big deal about it. He has only drank like 3 hundred and so many cc's today so far and it is almost 8pm. Yesterday and Saturday he hit his minimum of 700 cc's. In order to get him to take anything we really have to push him. Including chocolate milk. Anyway we are doing very good though considering. He is getting up everyday and playing in the play room for hours. He is off of the monitors now, only has the chest tube.

Up and About today

June 19/08 Dominic is doing well he moved up to stepdown today just after lunch and very soon will be moving to his own room....only 2 days post op. He is miserable...but we can all understand that. He is starting to get okay at taking his pain meds, hopefully he is understanding they help. He does seem to be in a lot of pain. His sats are still low and he is relying on oxygen and draining quite a bit from two of his chest tubes. He is still doing extremely well though.
June 20/08 Dominic was moved to his own room last night and I have been able to stay with him in a parent bed. He walked down to the playroom today and coloured and played for two hours. He was able to eat 2 and a half chicken nuggets and had one of his draining tubes removed. They are a little concerned that he is not drinking enough fluids though. He is still receiving oxygen but not much. He is doing amazingly well.

Doing Well!

I am sorry I haven't been able to update this page in some rooms in the hospital. But when we got to the hospital this morning Dominic was extubated it happened at 4 am. He was doing well and number are not too bad.

Quote from Dominic's nurse:"
He is recovering really well...no let me re-word that He is recovering extremely well!" He is drinking lots and eating freezies and jello. We have tried some solid food but he refused to eat it. He got rid of his IV in his hand (Atrial Line), the NG tube and the catheter. He is beginning to act more like himself(not the happy part though)...which is making things a little hard. He still needs the oxygen...but he keeps getting mad and pulling out the nose prongs, so they are trying him with just the tube blowing at his face. He seems to be okay with that but his O2 sats are only sitting in the low seventies although without the O2 he was in the sixties. We would like him in the 90s although the 80's is okay....that is where he was before surgery. They should go up though. They aren't too concerned about this yet as he still has a lot of fluid that he needs to get rid of. He is coughing really well...which is good. He is also blowing bubbles. Mostly he is watching a lot of movies and sleeping. Just tonight when I went into see him I got to hold him for a bit. It was difficult with all the lines and neither of us were that comfortable. He is quite miserable now and in pain but he doesn't want to take his meds. Please pray for him to be calm and take his meds if he needs them. We should definetly be upstairs tomorrow, apparently he is ready. Thanks for checking in and for all your thoughts and prayers. Please pray for a couple of other heart babies for me too. Cole goes in for surgery tomorrow morning. Wyatt has been in the ICU for quite awhile and having a rough time. And Patrick...he had his fontan yesterday too...he was first case but is having a really hard time. They are talking about taking what they did out..but that would mean he would probably be listed for a transplant.
Thank you

Jenaia

Keep Praying!

Paul stayed with Dominic late last night and when he left they didn't seem to think he would be extubated by morning anymore. His Sats are low and they think he may have fluid in his lungs. Please pray that this gets sorted out soon. His blood pressure is also low and has been since surgery...they were starting to get a little more concern last night as it had not yet gone up. They may already have this figured out as we haven't seen him yet this morning. We are heading there soon!

Thanks for the continued prayers and support!

Waiting......

Hi Everyone,
We were held off for a bit, because they didn't know whether there was a bed in CCU or not. Dominic went in at 12:50 this afternoon. He was very doped up when he went in. They gave him a med that made him drunklike...he could hardly hold his head up and he thought it was hilarious. We all had a lot of fun watching him as he goofed around just before going in. My mom videotaped a little bit of it...so I will post it later. So he went into the OR very calm which kept me calm. He kept the mood good with his funny reaction to the med. They are allowing about 5 and a half hours for the surgery. I will try and update again tonight. Thank you everyone for all the messages of support and all your prayers. So far so good!

Jenaia

Off to Toronto!

Hi Everyone,
So we have decided to head into Toronto tomorrow (Monday). We need to be at Sick Kids by 6am on Tuesday so we figured this would be a little less stressful and perhaps we can try to enjoy our night together before we hop on the coaster ride. We will be at the super 8 motel the first 3 nights...although I don't know if Paul and I will actually stay the night of surgery or the night after. We will have to see how we feel about leaving the hospital. It really is quite close though. My mom and Jodi Lin will be with us and definetly staying in the hotel. After those first three nights we will have to see what happens. We hope to get into Ronald McDonald house and have Jodi Lin with us...but we will have to see how long the wait is there.
Thank you everyone for your thoughts and prayers! I also wanted to thank everyone who donated Money to help us out or bought us a gift card. Thank you for all the support everyone is giving us. I feel quite confident that we will not have the added financial stress that a hospital stay can involve and we can concentrate on being there for our little boy. Thank you so much everyone!
Jenaia
P.S. I will try to update online as soon as possible, as for phone calls we will have to see how I feel and how much time I have.

Pre-op went great!

Okay sorry it took me awhile to update the blog. Many of you already know that Dominic's pre-op went well. We stopped feeding Dominic the night before we went in just incase he was going to be sedated for the echo. Sick Kids told us that they would try not to...but to have him ready if we needed to sedate him. We bought Dominic a new Spiderman Cartoon (his first one) to bring to the hospital with us and got him excited to watch it during the echo. We left the house at about 5:30 that morning and stopped at Walmart to buy the DVD. We arrived at Sick Kids about 15 minutes late at a quarter to 8. First thing on the agenda was bloodwork. I tried to tell Dominic that he would be getting his blood taken before hand to prepare him...but I wasn't sure what he got out of it. When we sat in the chair he was sad and scared but held out his arm when they asked. He cried but sat still and let them to their job. They gave him two whole sheets of stickers afterwards for being a good boy.

Next was chest x-ray. He complained only a little but when I showed him the tube restraint and told him we would have to use that if he couldn't hold still....he did as he was asked with just a little wimpering. Next was the echo. They wanted to sedate him but I told them he had been good all day and he was excited to watch his movie. Unfortunatly 4A and 4B don't have DVD players. The nurse called down to 4D to see if they could have a volunteer bring one over...and thankfully they did. So Dominic layed with Daddy and watched Spiderman while the tech did the Echo. It took more then an hour as they weren't getting the pictures they wanted (not Dominic's fault)...something to do with the collaterals they coiled off during the cath. The amazing thing here is that in all this time Dominic never asked for anything to eat or drink. Dominic normally asks for food the minute he wakes up and continues to ask all day until he goes back down. He never asked once! We did feed him some arrowroot cookies and apple juice at about 10:30 when we saw that he did not need to be sedated.

After the echo we went downstairs to the second floor for a duplex scan. This is an ultrasound on his main arteries in his legs. They like to do this because of his age and the fact that he has had two previous surgeries and caths. They wanted to make sure that the vessels are not to damaged I guess. This took about an 45 minutes to an hour...way to long. We then got to pick up our lunch and head back upstairs. The next 3 or 4 hours were spent in that room talking to everyone about the upcoming surgery. The nurse, the surgical fellow, the surgeon (nice to see him again), the physiotherapist (she was Dominic's favourite as she brought bubbles. We also got to talk with Svetzlauna (sp?) , she does a lot of the research studies. She hadn't seen Dominic since he was about 14 months old. She couldn't believe how big he had gotten. There are always lots of studies going on with these single ventricle kids. We signed up for one and are looking into another. Anyway we left the hospital just before 5 and had almost a three hour ride home because of the traffic. Dominic feel asleep before we even left the parking garage and slept the whole way home. I can't blame him...it was such a long day and he was so good!

Anyway thanks for everyones thoughts and prayers...we could tell you were praying for us as the day could not have gone much better. So now we prepare for next week...lets hope and pray it goes just as well.

Jenaia

Pre-op is next Monday

Please keep Dominic in your prayers on Monday June 9th as he goes in for his pre-op appointment. It will be a very busy day. It will start out with a blood test, then a chest x-ray and then we go upstairs for an echo, ecg and duplex scan. They will be sedating Dominic for the echo and hopefully that will make the day a little easier, but it will also make it a long day. We will be talking to a lot of professionals, who will be preparing us for the big day. Please pray that Dominic stays healthy and pre-op goes as scheduled.

Here is a poem by Stephanie Husted (a mom with a child who has similar defects to Dominic) that describes quite well where we are at right now awaiting the Fontan:

I've got Pre-fontan Syndrome...
And I can't concentrate...
I say off the wall things...
And I just can't think straight. I keep losing things...
(Yes...that includes my mind)
I've grown tired of hearing...
"Oh he'll be just fine".

I've got Pre-fontan syndrome...
My temper is weary...
One day I am happy...
The next day quite teary...
My husband says dear...
Tell me what to expect...
Will I come home to my wife?
Or come home to a wreck?

I have Pre-fontan Syndrome...
now I can't sleep at night...
And I'd do ANYTHING...
Just to make him "alright".

I have Pre-fontan Syndrome...
(Think I'll get that tatoo)
Then I might have the courage...
to face surgery too...

I have Pre-fontan Syndrome...
And I'll have the cure when...
I hand my son over...
and face "that day" again.

I have Pre-fontan Syndrome...
(not sure there's a pill)
To make me feel better...
(when it's over I will)

I have Pre-fontan synrome...
And with hope...
I do plea That someday this will seem...
Just a bad memory.

Finally A Date!

For those who don't already know. I called Sick Kids about three weeks ago to change my address with them and I figured I would check and see if they had any idea of a date for the surgery. I was told that I would probably have a date within the week and that they thought it would be in May. I was not expecting to get much of an answer at all...so I was quite surprised that they were actually thinking May. So the wait for the call began. Everytime the phone rang....I jumped and my stomach jumped....everytime I heard the beeping alert on the phone saying there was a message....my stomach jumped again.

Then finally this past Friday when we were getting home from Dominic's speech I checked the messages and there was one from Sick Kids. The message started..."Hello, this is Maricore from Sick Kids, I will be in my office until noon today...." I glanced at the clock at this time and saw that it was exactly 12:00pm. I listened to the message and waited for a date or a number for me to call. She left neither but said she did have a date. I hung up and searched the net for the number of Sick Kids cardiac clinic. (I don't call it much since Dominic is normally followed at Mac). Anyway I call and get a directory....I listened to about 15 names and was not hearing Maricore's so I hung up and called again. This time I just asked the receptionist if she could transfer me. That work much better. Maricore answered her phone at about 12:06. I was so happy I caught her before she left, I really didn't want to wait another weekend. So well I am talking to her she asks if I have a pen and paper ready while she tells me the date....June 17th. I think "I am pretty sure I will remember that date". I asked Maricore if she knew what that date was and she seemed quite confused. "It's his birthday" I told her. She felt bad and apologized, apparently she hadn't even noticed. I told her not to worry...I was very happy we finally had our date.

How crazy is that though. Dominic has only spent less then six weeks in the hospital in his whole life, which is very good for a child with his heart defects. But in that six weeks he has spent....Our anniversary, Father's day, Thanksgiving, my birthday and Christmas in the hospital. This time around we will also add his birthday and our anniversary a second time that is, as long as the surgery does not get postponed or anything.

Anyway so soon we are to hop back on the rollercoaster and I am feeling it in the pit of my stomach already. Please keep Dominic and all of us in your prayers. I will keep this blog updated with all that is going on.

Thank you,

Jenaia

The Pre-Fontan Cath

Written October 5th, 2007


We had an early morning as we had to arrive at the Hospital for 7am. We registered and went in so the nurse could check Dominic vitals. His O2 sats were 88, which is very good for him. He did well letting the nurse do everything, except weigh him. I don't know why but he always seems to have a problem with that one. We had to do it where we weighed him with Paul and then Paul by himself and subtract. We gave Dominic a little sponge bath with a special sponge to make sure he was good and clean for the OR. He wouldn't let us put the hospital gown on him though, I think for some reason he knew it meant something. He wanted to leave the room all the time, he kept pointing to the door and whinning. He knew something was up, but he was pretty well behaved considering. I got to go into the OR with him, while they put him to sleep. He screemed as soon as we walked in. It almost seemed as though he remembers from his last surgery. They used a mask and from the time they put it on him, he lost his fight and fell asleep within about half a minute. I left and sat in the waiting room. They told us the procedure was going to take anywhere from 2-3 hours. It was nice because there was three other families there who were pre-fontan and their child was booked for a cath. We got to talk to them and hear their stories. There was actually one boy who had the defect that is Dominic's most severe and it is a very rare defect, Tricuspid Atresia. It was nice to talk to them and he is almost 2, so close to Dominic's age. Anyway the Cath ended up taking 3 hours and 15 minutes, I was getting quite worried and very tired of waiting when they came out to tell us he was done. We we found him in recovery, he was asleep. The nurse told us he had woken up and started having a huge fit, so they sedated him. When they did the cath they coiled off an extra vein and an arterie that have appeared in his heart because of the repairs. I don't really understand this, but the doctor says it happens sometimes and that if they don't coil them, they will get in the way for the surgery. So they put coils (spring like things) around the vein and the arterie to close them off. So that was partly what took them longer, I think. They put the catheters in through an arterie in his neck as well as one in his leg and a vein in the other leg. We were told we would have to stay in recovery for 6 hours. When Dominic woke up he was a little fussy with good reason. He kept pointing to his IV, and his cath site on his neck and whinning. He was really good though, because he never tried to pull the iv off or anything. He just kept taking my hand and putting it on the IV, like he was telling me to take it off. He wanted water, so I the nurse gave me a three once bottle with a straw to see how he would drink it. He just started gulping it down. Then the nurse tells me not to let him drink it too quick because he will throw up. I pulled the drink away and he had almost drank the whole thing already. He did not get sick though. He then ate 6 freezies and then some crackers and arrowroot cookies. He was able to get everything off of him after about 4 hours in recovery and then the challenge was keeping him busy for the next 2 hours. He was not suppose to run around, but I couldn't keep him still. He was running and spinning in circles. He is suppose to take it easy, because of the anestectic and they didn't want one of the cath sites to bleed again. Anyway the doctor came into talk to us before we left and he said that Dominic is ready for the Fontan surgery. We just have to wait now until we get the call, after all the cardiologists have met and discussed Dominic. He told us that this could take a month or 2.

So now we wait......We left the hospital at 6:00 o'clock and Dominic has been great ever since, he isn't even taking any tylenol. I say this was a little preview for the surgery and I think he did pretty well. I can deal with a little fussy, because who wouldn't be fussy. Dominic seems to be pretty calm though, so hopefully this is how it will go for the surgery as well. But it won't be easy I am sure.

The Glenn Surgery

Dominic's Glenn surgery was booked for December 21st, 2005. So we celebrated Christmas at home early. We actually just did it, once we had all the gifts bought. So Santa came on December 13th just before midnight, while the kids were in the bath. I know it was crazy late, and I can't remember why the kids were still up anyway. The kids didn't know the difference though and they were just happy that Santa came. Dominic's surgery this time around went much better. We got into Ronald McDonald house right away unlike the 2 weeks we had to wait the last time. Dominic did amazing. He was extubated the first night and pulling his sats probe off his toe 2 days post op. Santa came again at Ronald McDonald house on Christmas morning and also at the Hospital. Christmas was the first day that Dominic smiled after surgery and that was the best christmas gift ever, he also got his last line taken out on Christmas day. We stayed one more day in the ward because he had a slight fever. We were able to go home on boxing day and have christmas with our family. Dominic started getting so much better after this surgery. He ate like a normal child and he ate a lot. He crawled at 11 months (a little late) but pulled himself up right after that and started crusing around the furniture. He waited until 15 months to actually let go and walk. Now he runs everywhere although he is beginning to tire out really easily. Dominic still doesn't talk much at all, but he is in speech therapy and we are working on that. He does sign a lot of things and communicates well with little speech.

Pre-Glenn Cath

In October 2005 just before the thanksgiving weekend Dominic went for a Cardiac Catherization so that the cardiologists could check the pressures in his heart in order to see if he was ready for the next surgery. We were told that as long as everything went as planned we would go home that night and if he had a blot clot or something it would probably be the next day. So we didn't really come prepared to stay overnight. After the catherization they couldn't find much of a pulse in his one foot. They eventually found that there was a clot in the site where the catheter was put in. They put Dominic on heparin and amitted him for the night. The Heparin wasn't working so they started Dominic on TPA, which is a very strong blood thinner. In fact it makes them bleed out in any healing wounds and they have to be on watch 24/7 so that someone can apply pressure right away when the spots start to bleed. This was done three times and it was awful, to see the blood and hear Dominic screem. For some reason it was a tough clot. His pulse in his foot was still week when they sent him home, but it was much better. It was a 5 day hospital stay that we weren't prepared for, but we were happy to be getting home. They hoped that the Enoxiparin blood thinners that he was already on would help to get rid of what was left of the clot. The cardiac catherization showed that his pressures were good and that he was ready for the next surgery. A followup ultrasound later showed that the clot was gone.

To the floor we go

Mommy's Journal - July 6th

Today you moved to the step-down room and they are thinking that you should be in your own room by tomorrow. You look great and feel great in my arms, you don't seem to be struggling anymore.

Mommy's Journal - June 10th/05

You got your own room on Friday, a day later then expected, but that is okay. You have been keeping Mommy really busy ever since. Last night you kept me up until 3:30am. The nurses have taught your daddy and I how to feed you through the feeding tube as well as how to give you your meds. Jodi Lin has been very happy to see you the last few days. She like to look at you and talk to you, kiss and hug you. She seems to have a little girl crush on the nurse that you had yesterday and Today. His name is Hugh and Jodi Lin kept following him around and wanted him to stay with her all day.

Dominic just kept getting better and better, as we learned how to take care of him at the hospital. He came home July 15th, on the feeding tube. He had to have his food thickened that he took by mouth as a feeding study showed that he asperated thin liquids. I pumped for 3 and a half months, hoping that one day I would be able to nurse my boy, which they never let me do, even in the beginning before surgery.

The Norwood Surgery and ICU

Mommy's Journal - June 23rd We came into see you at around 7:30am the morning of the surgery. You were screaming because you were hungry and hadn't eaten since midnight the night before. The nurses wrapped you up and you fell asleep. We followed them to the OR waiting room when I broke down crying. Suddenly I felt hands on my shoulders, which I assumed was one of the nurses. Then I saw your Papa Philip and realized that it was Gramma Linda behind me. She asked what was wrong and I just said "I don't want him to go". Seeing all our family made me feel much better though. Your sister was there, she got to see you and give you a kiss before you went in for the surgery. That made me feel good, that she had a chance to see you again. You were sound asleep when they wheeled you into the operating room. The wait for the surgery to be over went extremely fast for me. I think it was a slow day for your daddy though, he seemed to be constantly thinking about it. Our family and having to pump often kept me good and distracted. The surgery went from 9-2:30, then the doctor came out and told us that the surgery went as good as it possibly could. Now it is up to you and how your body reacts to the surgery. The day after surgery was a rocky day. Sometimes we went to see you and you were doing well, and sometimes your monitors didn't look so good. There was a lot of beeping. At one time your heart rate was quite high and I sat there with you until the nurses got it to normal again.

Mommy's Journal - June 23rd, Part 2

Today they stopped giving you the muscle relaxants as it slowly wore off we could see you making sucking movements and grasping our fingers a little. We went in early this evening to see you. I think you heard us coming, because when we got to your bed you were staring right at us. It was so great to see you little eyes again. The nurse didn't even know you had woken up until I told her. It seems like you just opened them up because your heard us. You were grasping our hands really well too. If we tried to take our finger away you would grasp it tighter and if we got it away, you would reach up to find it again. The nurses said you are doing really well and you will possibly be in the step down room in a couple of days. I am so happy to hear that. Your are our little trooper. We love you lots and know you are strong.

Mommy's Journal - June 25th

Yesterday your cardiologist Dr. Kantor came to talk to us because he is going on holidays and won't be back until July 16th/05. He said that you were breaking records. He said that he figured you would be out of the hospital by the time he gets back. So the next time he would see you would be as an out-patient. Mommy and Daddy were very excited about this Early this afternoon you were extubated (Your breathing tube came out). The nurse told us that she thought you would probably be transfered to a step-down room today. They gave you an oxygen mask to help you with your breathing, and said you would probably only have it for 4-6 hours. Unfortunatly you still had it when we said goodnight to you.

Mommy's Journal- June 25th

This morning the mask was replaced by CPAP. You have been having a hard time breathing. Today was not a good day for you. You sleep most of the time but when you are not sleeping you are having a fit. The nurses have been giving you drugs to keep you calm because you get yourself so worked up. It is really hard for your Daddy and I to watch because you really look like you are struggling and your cry is now really raspy. The doctors have talked about putting the breathing tube back in, but I really hope they don't have to do this. When we said goodnight to you tonight you were quite sedated. The nurses said that this way you would hopefully sleep all night and the oxygen would have a chance to help you. I truly hope that the cpap is gone tomorrow and that you are breathing great on your own. I also hope that I will get a chance to hold you, as I believe that is all you really want.

Mommy's Journal- June 27th

The nurses all talk about how cute you are, even though you look really sick right now. You are really pale and you just look so sad and tired. Tonight I really wanted to pick you up and cuddle you close, despite all the wires. Last night your sats # was very low, it went down to the low 60's when it should be at 80 or at least in the 70's. The doctor was doing everything he could think of to help you but not much was working. They called in ENT (Ear, Nose and Throat)Specialists to come and look at you because they think your problem could be in this region since no problem is showing up in you chest x-rays. So all day today we were waiting for ENT. They were all in surgery this morning and as the doctors thought you were struggling too much, you were reintubated. It was hard for us to see this but you seemed calmer and more alert with it in. You looked at Daddy and I and more alert with it in. You held our fingers tightly and once again did not want to let go. I am quite frusterated because ENT never really came to do anything today. They pretty much said they couldn't do anything because you were intubated. I just want them to find out what is wrong with you and fix it. I just feel like they aren't helping you right now. Everytime you fuss they just sedate you, to keep you quiet, but they need to find out what is making you fuss so much. Everynight I go to bed hoping and praying that you will be atleast a little better when I see you in the morning.

Mommy's Journal Monday July 4th.

You were extubated for the second time at around 3pm thursday June 30th, nobody from ENT came to look at you. You seemed to be doing fine before we left for home at around 6pm. I called to check up on you that night before I went to sleep and the nurse said that as long as you were calm you were okay but when you were upset you didn't look very good. By Friday morning you were reintubated again and ENT had still not looked at you. You were extubated again yesterday morning and finally ENT came to look at you. They found that your left vocal cord is paralyzed and because of that your airway is narrowed. The doctors think that the vocal cord will begin moving again on it's own if you are left as often and as long as possible without the ventilator. It has now been about 34 hours since the tube was taken out and you seem to still be doing fine with the oxygen box over your head.

Mommy's Journal- July 5th

Today Daddy and I went to see you this morning and we both got a chance to hold you and cuddle with you. We just had to hold the little oxygen hose near your face to make it easier for you. I went to see you again around six this evening and all the oxygen stuff is gone. You are now breathing on your own with no help. I held you for an hour and you were fine. You are quite congested but that just means you cough and gag a lot. You have been spitting up a bit too, but over all you are doing great. The nurse said the plan is to have you moved to a step- down room tomorrow. Although we have learned here at sick kids things don't always go as planned, but I sure hope they do.

Getting to know our new baby boy

June had come. My due date was June 28th, but I decided to have a pre-planned C-Section, so that We knew he would be born in Toronto at Mount Sinai, so he could be transfered to Sick Kids. My daughter was born emergency C-Section anyways. The C-Section was scheduled for June 16th. But at the last minute sick kids had an emergency cardiac baby come in, so there were no beds for Dominic.

Mommy's Journal - June 18th

You arrived to our world yesterday at 3:01pm. You are such a beautiful little boy. Seeing you made Mommy cry. You were out, you looked good and you were screeming. I just kept listening for your cry as the doctors fixed me up. As long as you were crying I knew you must be alright. Just before the doctors took me into the room to have you, I told your Daddy that I had never been so scared in my life. I was afraid of having the surgery, but even more afraid of them cutting the cord. I loved feeling you inside me kicking away. It was always hard to believe that there could be anything wrong with you. The doctors cutting the cord meant you were on your own. I could no longer keep you alive. You now had to do you own breathing and use your own blood to circulate throughout your little body. The doctors said you were doing great though. You were breathing on your own and your blood had good mixing. All our family got to go in to see you, they all said you were so cute. The nurse shaved your hair a bit in order to try and get an I.V. in. They let your dad and I have your hair. You like to hold your Daddy's and my fingers. You have a very strong grip. Which I believe means you are strong and are going to get through your surgeries as well as possible. The nurses say you are really good, as long as you have your sucky, although you have always been happy without it when Mommy and Daddy are with you.

Mommy's Journal- June 19th

You looked very peaceful today sleeping in your crib. They had a sleeper on you today, it made you look warm and cozy. The best part about today is that I got to hold you for the first time. Daddy and I both got a chance to hold you and cuddle with you. You were so good when we visited you. You just slept the whole time. But it was so great to get the chance to cuddle. I got about 10ml of breastmilk for you this evening and that is about half of a serving for you right now, so that made me happy. The nurse mixed it with some formula and I was able to feed the bottle to you. You were quite sleepy again though. I tickeled you to try and wake you up. Daddy thought it was funny so he took a picture, and then you woke up from the flash. You gobbled down the milk really fast and burped some big burps.

Mommy's Journal - June 20th

Today was our hardest day so far, although we know tomorrow is going to be much harder. Today when Daddy and I went to see you, we were told that your surgery is going to be tomorrow. This was so scary and it hit us both really hard. Although we knew the surgery was coming soon, the word tomorrow made it too real and too close. I just feel as though we haven't had enough time with you and I don't want to hand my good looking little boy over to these doctors who are going to cut him open. Your Daddy and I placed our hands on you and prayed for our little boy and his troubled little heart. The Anestegiologist talked to us this afternoon and told us about the many risks involved in a surgery like this as well as the state you will be in after surgery. It was all so scary, your Daddy and I both could not hold back the tears any longer as we pictured our little boy in that sort of condition. The surgeon gave us the realities of a surgery like this but he made us feel a little better about the risks because they are not really likely to happen. I was hard to pay attention to the doctor as he spoke because there was a little set of dark eyes staring up at me. You have hardly really looked at me until today and all I wanted to do was sit and talk to you. You seemed as if you were paying attention to what the surgeon was explaining, as if you were preparing yourself to be tough, and telling me it would be okay. As I was telling you to be strong because I know you are and you'll do great. Lots of people will be praying for you tomorrow and I now have a strong feeling that you are going to be okay. God is watching over you, He has some sort of plan for you, it is just not something any of us was meant to know just yet. Be Strong little boy, We all love you so much and we will be waiting until the day we can bring you home. Love you forever and always Mommy

Choosing that special name

After knowing all about the babies heart defects, we knew he would be a special baby. Infact that God was giving us this baby as a gift and was entrusting us to take care of one of his special children. We knew that he needed to have a special name. I had picked out Bronson, but it means "Brown ones son", that just wasn't special enough, specially considering that both my husband and I are very white. My husband had wanted the name Calvin, but the meaning for Calvin is bald, and that wasn't special enough either. So we looked, and looked and looked. It seemed like all the names with great meanings were either really plain or really different like Ismeal. I needed one I liked. We chose Dominic, because it was a little different but we liked it and it means "Belonging to God", it was perfect.

There is a poem by Florence Correa, that I believe describes the meaning of Dominic's name and the way we needed to think about this baby. It is called "The Lent Child" :

"I'll lend you for a little while this child of mine" God said "For you to love the while he lives and mourn for when he's dead, it may be one or two years, or forty two or three; but will you till I call for him, take care of him for me? He'll bring his charms to gladden you and- (should his stay be brief) - you'll have his lovely memories as a solace for your grief I cannot promise he will stay, since all from earth return; but the lessons taught below I want this child to learn. I've looked the whole world over in search for teachers true; and from the things that crowd life's lane - I have chosen you. Will you give him all your love? Nor think the labor vain? Nor hate me when I come to take this lent child back again?" I fancied that I heard them say. "Dear Lord thy will be done. For joys thy child will bring, the risk of grief we'll run. We will shelter him with tenderness, we'll love him while we may and for the happiness we've known forever grateful stay. But should Thy angels call for him much sooner than we've planned, we'll brave the grief that comes and try to understand."

Dominic Story Part 1 - Learning about our baby boy

Dominic's story started back sometime in Sept/04 when I became pregnant with the little boy that would change my life like I never realized was possible. My daugther Jodi Lin would be two in a half when this baby was sepose to come and that just seemed like the perfect gap, we were so happy, to be having our second child. I decided I wanted to find out the sex of this baby, so I was ready when He came. I had my first ultrasound a little late at 21 weeks, I was so excited to find out who it was that would be joining our little family.

The technician said the baby was moving too much and they couldn't tell the sex, She also said they weren't able to get the pictures that they needed of the babies heart. They weren't able to see all four chambers, and I would probably need to have another ultrasound scheduled. That was fine, then maybe I could find out the sex the next time. I had no idea, that I should be worried, the baby was just moving too much they said. I figured, "well that's great atleast this baby is active."

At 23 weeks, I had my next doctor's appt. with my family doctor who was expected to follow me through the whole pregnacy and deliver the baby. He never called me with the results to the ultrasound he just waited until my appointment and then told me that he was sending me to McMaster Children's Hospital for the second ultrasound since they had better equipment. I still had no idea that this was serious, I thought it was a little strange that they would send me out of town, but I figured it was just because McMaster was the best.

I called my family doctor again before my appt. at McMaster just to check about where I would go when I got there. After talking to the secretary for a bit, she ended our conversation by saying, "Good Luck, I am praying for you". THAT scared me, why was she praying? Should I be worried? I thought this was no big deal. Praying meant it could be a big deal, so I decided I better start praying for myself and my Baby too.

I was still calm when I left my daughter that morning with my mother, The day my husband and I went for the appointment that would change our lives for ever. When the technician started looking at my ultrasound, she seemed confused, and then all of the sudden their was three other people in the room, all looking at my babies pictures, one was a cardiologist. They were discussing and trying to figure out which chamber was what and where was the fourth. This was getting really scary. I remember still thinking though "This can't be real, we are both healthy, Jodi Lin is healthy, this couldn't happen to us." Some good news though, the technician reassured me that this baby was a boy, no doubt about it. I was finally getting the baby boy I longed for, or was I?

After the ultrasound we had to go to genetics and talk with a doctor there and fill out questionaires that asked us everything about our families, including whether my husband and I were related by blood. (Ewww, Gross). Nothing, no questions applied to us, no babies with any problems in either family. We were going to be the first. Why us?

The doctor came in and explained so many things to us that we were so overwhelmed. They weren't sure what the problem was yet but, their was definetly something wrong with his heart, and it was bad. We were scheduled to come back for an echo, to see exactly what the problems were if we could, and if I didn't want to terminate the pregnancy. Yes abort, they encouraged me to abort, this child at 24 weeks, who had been playing football inside me for weeks now. I loved this child way too much, there was no way, were these doctors crazy? We figured this was our child and we needed to do the best we could for him.

We left the hospital that day, dazed and confused. What was life going to be like now, could we lose a child. That has got to be the worst thing that could ever happen to anybody, and it was becoming a clear possibility for us. What were we gonna do? we both have always been so strong, but how were we going to get through this? How were we going to tell our family? I didn't want to speak of the possiblilities the doctor had given us.

When we got to my mother's we acted as though everything was fine. My mother knew there was something wrong though, and of coursed she asked how everything went, all I got out was tears. I was able to eventually explain what the doctor had said, but I needed time to calm down, I can't even talk when I am upset.

We had the echo done about a week later and it was amazing what the doctor was able to see in the picture on the screen. To us it looked like a regular heart, it was beating and it seemed to be a strong beat. But to the cardiologist there was a lot more to see. His heart had 4 different defects that the cardiologist could detect. He had Transposed Great Vessels (TGV or TGA), Coarctation of the Aorta (CoA), Tricuspid Atresia (TA) and Ventricular septal Defect (VSD). The doctor gave us diagrams to try and explain the defects and the difference between the babies heart and our own. He told us that he would likely need 3 surgeries in the first 3 years of life, the first one being in the first few days of life, the second somewhere between 3 and 6 months and the third at 2-3 years old. He also said that these surgeries are just a temporary fix and that eventually a full heart transplant would need to be done, but likely these surgeries would take him through his childhood. We were also told that of all the children with these sorts of defects about 75% are still alive at the age of 21. It was scary to hear this but we knew we needed to have faith.