When I have my bowling league, my parents watch Anniek and take her to the library. The library had a contest for the kids and every time they read a book (or if they are too young to read a parent reads a book to them) they record it on the paper that the library gave them...and for each book they get a ticket for a draw to go see Disney On Ice! The day after the draw was held I got a call saying that Anniek had WON 2 tickets to go see Disney On Ice: 100 Years of Magic at the John Labatt Center!!! So at the end of January we are going to be seeing Disney On Ice!!!
After Weeks of going to the hospital 1-2 times a weeks with Anniek for "Lunch Dates" in the room where they do the swallow study to get her used to the room...and everything in it, then used to the chair, other people, the machine and everything that would happen during the swallow study Anniek had a repeat swallow study! It went really well...Anniek took a bit of ALL the food that was offered to her...and she PASSED that is right PASSED!!! Which is GREAT because now we do not have to worry about her "stealing" food from other kids in her class at lunch and stuff. We still have to work on liquids with her but she is not allowed to have pretty much ANY food that she wants...other then juicy fruits (because of the liquid when you bite into them). But solids is a HUGE step in the right direction for her! Anniek is LOVING it being able to have what the other kids are having at the school now too!
Anniek had a swallow study on Thursday. We were all really hoping that she would be able to move forward and be able to eat more then just pureed food and thickened liquids. Unfortunately all she did at the appointment was cry...she didn't want ANY of the food that was offered to her or anything. She didn't get her morning feed so she should have been hungery and WANTING to have food! It was so frusterating. I think it was because of the chair that they strapped her in...but they said that she HAD to be in that chair to stay in the picture...it seems like catch 22. I asked what they do now and how long I will have to wait for a new appointment...becuase she was not cooperative with this appointment and didn't eat anything they do not need a referal for another appointment with them...and they are willing to have Anniek come in for some "lunch dates" as many as she needs to feel comfortable with being in the chair and in that room and they work as slowly as Anniek want to move towards eventually being able to repeat the study. The good thing is though that when she is ready to have the study repeated they will make it for the week after they think that she is ready and have an appointment a couple days before the study! Hopefully she will not take too long getting used to the room and every thing...other wise parking is going to get very expensive this month...lol
Anniek was standing on the chair which I have told her like 101 times not to do...and she got up and stood on it while I was doing dishes...I came back in the room to check for dishes in the living room and she was standing on the chair again so I said "get down" and I guess she lost her balance because she fell and when she fell she put her hand out in front of her (like everyone does). She was crying and holding her wrist so I was like can mommy see it and she would cry more when I went to look at it and say "NO...OWWW" so seeing as it was her right hand I got a marker and was like want to color to get her to reach for it...and she went to put it hurt to take it so she switched hands so I thought that I better take her in. We were only there for like 2 hours :-O They fast tracked us to x-ray when we got there and that took longer then getting the cast...It was more of a wait to be registered after triage (45 min)! She broke her arm on Monday (July 14,2008). On Tuesday whenever she looked at her arm she would start crying, but now she is starting to use her arm again and she holds it out for the day care to wrap it (like a big girl) when they have their outside time.
Anniek had her cardiologist appointment today (July 10, 2008). Unfortunately her cardiologist as well as the other one left to go out west, so she doesn't have a cardiologist at the moment. She will be getting a new one in the fall. We saw Liz though instead. Anniek is up to 25lbs now...WOW She is almost the weight of a normal toddler her age! She is also starting to eat more. Her LPA is still a bit narrow...but the temp cardiologist is happy with it for the mean time and she doesn't have to go back to the cardiologist for another 6 whole months! Then we will be able to meet the new cardiologist too. I hope that the new one is as good as her old one that left.
Anniek had her Cath on February 13th 2008, exactly 2 years after her diaphragm surgery! She only had to stay over night and did very well. It was nice to see some of the nurses again. Hopefully this cath will work better then the other's. The doctor that did her cath said that her LPA had to be widened in a different spot then it needed to be done last time...so that was a good thing to hear. Hopefully at her next cardiologist appointment he is as happy as the cardiologist in Toronto is with the looks of her LPA.
I was told that the cardiologist would be talking to Toronto once again about Anniek’s LPA and that because there had already been 2 previous failed attempts widen the LPA that they would be talking about weather it would be better to do a surgery or another cath to correct the LPA. I found out a few weeks later that Toronto would like to try doing another cath. So the cardiologist sent the referral in for a cath in September of 2007. It seemed like forever for us to get another date for a cath, but we finally got one on February 7th 2008. We went to the pre cath on the 6th and we were informed that there are no beds available so we will have to rebook the cath. We had driven up the night before to avoid a snow storm and now we had to drive back in it, we were not impressed at all.
Anniek had been having problems with throwing up off and on since she came home from the hospital. It was not a “normal” baby throw up, but she would throw up the same feed every day. Anniek would throw up until her tummy was empty and if she was getting fed still while she was throwing up she would keep throwing up as more food went in! No medications seemed to be helping with the throwing up so in November of 2007 Anniek had a fundoplication to help with the throwing up problem. After Anniek had her fundoplication and came home from the hospital she seemed to want to eat more and would not throw up nearly as much as she did before the fundoplication.
On Victoria Day 2007 Anniek was running around at my grandparents and she tripped and fell. She got a cut in her forehead big enough to need stitches so we had to bring her into the hospital. I told the nurses that she would need to have Antibiotics because she is a heart baby before she got the stitches done. We were seen very quickly but I was very annoyed when the student doctor told me that she didn’t think Anniek would need them! I told her that I was told by Toronto that she would and that she had to have the antibiotics to just get her ears pierced, so why would she not need them for the stitches. The student doctor then paged Anniek’s cardiologist to find out if Anniek needed the antibiotics or not and after he confirmed that she did she put an order in for them. I find it so annoying when people think that they know things and they don’t. Parents know their child best and know what the doctors have told them that their child needs!
In April 2007 Anniek was admitted into the hospital with aspiration pneumonia, while we were there we got to have an appointment with the GI doctor seeing as we were waiting to get an appointment with him because of Anniek’s throwing up problem that she has had off and on since she was a baby. He sent his student in to get all the information and I told the student the formula and that the formula was gluten free & lactose free as well as giving her all the information that she wanted. The next day the Advanced practice nurse from the cardiologists office came in and told me to not let the GI doctor tell me that Anniek has a certain condition because there is no such thing. Later in the day the GI doctor came into the room with the student and the student tells the GI doctor and myself that she thinks that Anniek has this condition that I was already warned there was not such thing or Celiac (which she couldn’t have because her formula is gluten free) or is lactose intolerant (formula is lactose free)! It seemed like she did not know what she was talking about. I would have much preferred her to say that she didn’t know what was causing the throwing up instead of making up a problem or coming to the conclusion that it was something that it couldn’t be just because it runs in my family!
Things seemed to be fine after her cath until we went to her next cardiologist appointment. The cardiologist thought that her LPA didn’t look as good as it should and wanted to see her for another Echo in a couple of months instead of about 6-12 months. When we went back a few months later he still didn’t like the look of the LPA and it did not appear to be getting any better so he decided that it would be best to have another Lung Perfusion scan done. The lung perfusion scan was set up and we went to the appointment. Because Anniek is a heart baby they have a very hard time getting an IV line for while she was sedated, when the nurses finally got a line we went down to get the scan done, but when they went to put the dye in they found out that they had lost the IV line. When they tried getting a new line Anniek woke up from the sedation, so we had to reschedule. I was so frustrated! We were lucky enough to be able to get another date for another attempt at the Lung scan the next week! Two weeks later we went to the cardiologist and we got the results of the scan. I was not surprised to hear that he was not happy with the numbers that the scan showed. Having seen a couple of the scans done before I was pretty sure that the scan didn’t look like the doctor would be pleased about it.
At Anniek’s cardiologist appointment in September we were told that once again Anniek’s LPA was very narrow. By this point it seemed like we only got bad news when we went to see the cardiologist. We decided that since Anniek was going to be getting a G tube to replace her NG tube at the beginning of October the tests would be done while she was in hospital any way. The test showed that it would be better for Anniek to go for her next cardiac cath before Christmas rather then after. On the 27th of November Anniek had her third cardiac cath. After the procedure her temperature went very high so she had to spend the night in the hospital.
Anniek went to Toronto for a second cardiac cath on June 14th, the cath went well and Anniek was discharged the next day. She had a lung perfusion scan done before the cath and it showed that Anniek was not getting enough blood to her right lung, so the cath was needed. As soon as the cath was finished you could tell that more oxygen was going to her right lung by the pictures. Anniek’s oxygen levels were also better then they had been in the past. Anniek had a bit of swelling in her leg after the procedure and had to spend only one night in hospital.
The day before Mothers Day Anniek started vomiting a lot so I brought her into the Emergency Department, an x-ray was done and showed that Anniek had “wet lungs”. The on call cardiologist was called in to do an Echo of Anniek’s heart. I was told that Anniek would have to go back to Toronto sooner then planned because her LPA was very narrow. Anniek was in hospital for a week.
At the cardiologist appointment a month after we had been home the cardiologist told me that by the looks of the Echo, Anniek’s left pulmonary artery (LPA) was narrow. I was told that he wanted to do a sedated CAT scan before Anniek’s next appointment which would be in 3 months.
She was finally able to be transferred to the Children’s Hospital in London on February 22nd, so that we could get to know the nurses, Doctors and Anniek’s Cardiologist that would be following her.
On February 27th, at almost 2 months old I was finally able to take my beautiful daughter home for the first time. Anniek came home on one medication and with a feeding tube that went in through her nose (NG tube). I was taught how to feed her and reinsert her NG tube if anything happened to it while we were in Toronto; by the time we were home it was no big deal to me.
Everything seemed to be going well, Anniek was able to get weaned from oxygen and we were ready to go home. All of a sudden on the night before we were supposed to be going home Anniek started needing oxygen again. I was worried that we might not be able to go home but it was decided that Anniek could go home on oxygen and everything got set up for that, I was so happy that we were going to be going home the next day. Unfortunately during the night once again Anniek started needing more and more oxygen, so we were unable to go home. I felt like we were never going to be able to go home.At one point I secretly felt like I wanted to just go home for a night just to sleep in my own bed.
Tests were done and it turned out that Anniek’s right lung was not getting enough air into it because of the paralysed diaphragm. Anniek would have to go for a surgery on her paralysed diaphragm. I was told that Anniek would be brought up for discussion for surgery on the 13th of February. Instead I was waken up by a nurse coming in the room on February 13th telling me that Anniek would be going for her diaphragm plication that day! Anniek only spent two days in the Critical Care Unit and was weaned from oxygen much easier then she had been before.
On January 19th when Anniek was 17 days old she had open heart surgery. I was overjoyed when the doctor came out to tell me that the surgery went well. I still had to wait an hour to go see Anniek in the PICU, but she made it through the surgery. I was told that because of swelling they were unable to close her chest so it was still open and would be left open for another 3-5 days.
After the heart surgery it seemed like there was one thing after another. I was unable to touch Anniek because she was on a special machine to keep her body cool, so all I could do was sit with her.I ached to hold Anniek again or at least just touch her to let her know I was there.
After she was taken off that machine and her chest had been closed I could not hold her until she was off the breathing machine which was delayed because there was no "leek" and her throat was swollen. We also found out that the right side of the diaphragm was paralysed because the nerve got nicked during the heart surgery.
It seemed like an eternity but I was finally able to hold my daughter again after 9 days. On the 10th day after the open heart surgery Anniek got moved out of the PICU and into a step down room on the cardiac floor, the next day Anniek got her own room and a visit from some of the Toronto Raptors that were visiting the floor!
After a week Anniek was doing so well that it was decided she was ready to go home and she was moved into a private room so that I could take care of her and be there in the room with her during the night. Unfortunately as soon as we got into the private room and Anniek was hooked up to the monitors her oxygen saturations dropped, she was moved back into a step down room.I was a little worried but seeing as her oxygen levels went back up as soon as we got back to the step down room I did not have to worry very long. The rest of the day Anniek was fine in the step down room so they decided to move her back into a private room. Once again as soon as we got there and she was hooked up to the monitors her oxygen saturations dropped, so she went back to the step down room again. The on call cardiologist was called and tests were ordered to see why her oxygen levels were acting up. Anniek’s PDA had almost closed again, the Cath did not work.I was told that Anniek would have to have her open heart surgery before she went home from the hospital.I was devastated, I was all set to finally go home with my daughter and be a parent.I sat in the private room that was supposed to be for Anniek and me and cried.One of the nurses came to comfort me and said “It might be easier to have it done before you go home then go home knowing that you will have to come back in about 6 month” I thought about what the nurse has said to me and realised that she was right, I would have had a hard time knowing that we would have to come back and have a few months to worry about the open heart surgery.I was extremely worried about Anniek having to go in for surgery, but I was a lot calmer then my mom.Anniek was put back on medications to keep her PDA open. Unfortunately because babies are so small it is extremely hard to get IV access and keep it open, after trying a number of times and failing it was decided that it would be best for Anniek to get a PICC line to give her the medication that she needed.
. A date was book for the Cath and at 7 days old Anniek had her first procedure. The only way to tell if the cath worked was to wait for her PDA to close again. Anniek was doing really well after the Cath and she was able to be weened off of her sedation and I was able to hold her again.I was also able to give her bottles, I had hopes of being able to breast feed eventually so that I could stop pumping too. I was warned though that cardiac babies tire quicker then healthy babies so she might not be able to ever breast feed.
Anniek was transferred to Sick Kids the next day.Since I had a caesarean I could not go with her.My dad went to Toronto so Anniek would not be alone.Although I was grateful that my dad would be with Anniek, it was terrifying to have my baby leave without me and to know I might never see my darling baby girl again.I do not cry easily, but the tears rolled down my cheeks.I felt that my heart had broken into a thousand pieces.
After I got out of the hospital, still recovering from my sugary I went to Toronto to be with my daughter. In Toronto I got given a lot of information about the heart condition that Anniek’s heart condition. It turns out that Tetralogy of Fallot is a cardiac anomaly that refers to a combination of four related heart defects that commonly occur together. The four defects include: Pulmonary Stenosis (narrowing of the pulmonary valve and outflow tract or area below the valve, that creates an obstruction of the blood flow from the right ventricle to the pulmonary artery), Ventricular Septal Defect (a hole between the heart’s two lower chambers) , Overriding Aorta (the aortic valve is enlarged and appears to raise from both the left and right ventricles instead of the left ventricle as occurs in normal hearts), and Right Ventricular Hypertrophy (thickening of the muscular walls of the right ventricle, which occurs because the right ventricle is pumping at high pressure.On top of the Tetralogy of Fallot Anniek also has Left Pulmonary Artery Hypoplasia.
In Toronto I was told that Anniek would need open heart surgery, but it would be better to wait until she was about 6 months old when she would be bigger and stronger if possible and that they wanted to do a Cardiac Cath to try to postpone the surgery.
On Jan 2nd after a complicated pregnancy and over two days of labour resulting in a caesarean, I was overjoyed when my baby was born.My nurse told me that I had a healthy baby girl that weighed 7lbs 10oz. I named her Anniek. I was told that she had a heart murmur, but I did not need to worry since this is a common condition in newborns which goes away a baby’s Patent Ductus Arterious (PDA) closes.
About 6 hours later when Anniek’s PDA closed my world fell apart.Anniek started to cry and because of my caesarean I was unable to get up to comfort her.I rang for the nurse. When the nurse came, she told me that she was going to take her to have a doctor look at her since Anniek looked a little off-colour to the nurse. I was still groggy from my lack of sleep and wasn’t overly concerned.
Anniek’s godmother Joanne stopped by shortly after.I told Joanne what had just happened.Since Joanne is a nurse, she immediately went to investigate and found out Anniek was in the Neonatal Intensive Care Unit (NICU) at the hospital and some tests were being done on her.Joanne offered to call my parents if I wanted.I knew they were visiting my grandparents half an hour away but I decided it would be nice to have my parents with me.
Shortly after my parents arrived at the hospital, I finally received a visit from some doctors.When two doctors come into your room at once, it is not reassuring.One of the doctors told me that they had run some tests on Anniek.They had initially believed that Anniek had an infection but after running the tests they thought she had a serious heart condition.I was told that they had to do some more tests but that she was in critical condition and her condition was potentially life-threatening.My heart stopped.I was devastated. My beautiful baby girl could die at any moment.Why would this happen to someone like me who had followed all the doctor’s orders and taken good care of myself? The other mother in my room had her baby in the NICU because the mother was addicted to drugs, yet her baby was just suffering from withdrawal and otherwise was perfectly healthy.There are many times that life does not seem fair..
I was told that my baby girl had a Congenital Heart Defect (CHD) called Tetralogy of Fallot (TOF or TET) and had to go to The Hospital for Sick Children in Toronto as soon as possible. At this time, I had never even heard of CHDs…Unfortunately, I had a lot to learn.
I am the Mommy of a special little girl (Anniek)...she was born with a Congenital Heart Defect (Tetralogy of Fallot), has a communication based learning disability and is on a feeding tube (g-tube). She lights up my world and means everything to me. I also had a son in 2001 that was born 16 weeks too early and passed away when he was 3 weeks old due to being born so premature.
Tetralogy of Fallotis a congenital heart defect (a problem with the heart's structure that's present at birth). Congenital heart defects change the normal flow of blood through the heart. This is a rare and complex heart defect. Tetralogy of Fallot is made up of four different heart defects that are:
Ventricular Septal Defect
The heart has a wall that separates the chambers on its left side from those on its right side. This wall is called a septum. The septum prevents blood from mixing between the two sides of the heart. A VSD is a hole in the part of the septum that separates the ventricles—the lower chambers of the heart. The hole allows oxygen‑rich blood to flow from the left ventricle into the right ventricle instead of flowing into the aorta, the main artery leading out to the body.
Pulmonary Stenosis
This is a narrowing of the pulmonary valve and the passageway through which blood flows from the right ventricle to the pulmonary arteries. Normally, oxygen-poor blood from the right ventricle flows through the pulmonary valve into the pulmonary arteries and out to the lungs to pick up oxygen. In pulmonary stenosis, the heart has to work harder than normal to pump blood, and not enough blood can get to the lungs.
Right Ventricular Hypertrophy
This is when the right ventricle thickens because the heart has to pump harder than it should to move blood through the narrowed pulmonary valve.
Overriding Aorta
This is a defect in the location of the aorta. In a healthy heart, the aorta is attached to the left ventricle, allowing only oxygen-rich blood to go to the body. In tetralogy of Fallot, the aorta is between the left and right ventricles, directly over the VSD. As a result, oxygen‑poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery to the lungs.
An Extra Heart Condition That Anniek Has Is Left Pulmonary Artery Stenosis
Pulmonary Artery Stenosis
Pulmonary artery stenosis is a narrowing that occurs in the pulmonary artery, a large artery that sends oxygen-poor blood into the lungs to be enriched with oxygen. The narrowing may occur in the main pulmonary artery and/or in the left or right pulmonary artery branches. This narrowing makes it difficult for blood to reach the lungs to pick up oxygen. Without enough oxygen, the heart and body cannot function as they should. In an effort to overcome the narrowing, the pressure in the right ventricle (the chamber that pumps blood into the pulmonary arteries) rises to levels that can be damaging to the heart muscle.
