Tuesday, April 29, 2008

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,


Friday, April 11, 2008

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.