A years worth of updating in one post

I decided to check out my own blog for the first time in almost a year. I had given up on it a bit last summer because really, things were not all that exciting. After reading some comments and having someone asking if it gets easier I wanted to update and show you that YES! things are getting easier.

Parker had his first birthday and I kind of lost it. I'm not sure if it was the birth control I started, the years worth of exhaustion, or that the first year was over and I had wished it away for a full nights sleep. For few months I was kind of depressed. I napped a lot and didn't go out much. I think part of it was to do with the first year being over. By his birthday he was learning to walk, saying a few words here and there and was past the infant stage. In my eyes, he was past the scariest part. I was so happy we'd made it and still so sad my baby was 1.

I am very very lucky. Parker didn't get sick very often. A cold here and a very mild fever there. I would feed every 2 hours and monitor him closely. But we didn't end up at the hospital until February. 7 months after his birthday and 10 months since the last time he was there.

We were admitted on Feb 24. He had a cold a week before and was getting better. Then one morning he had a very high fever. He was still eating a little bit every couple hours. Then I got sick. REALLY sick. I couldn't believe how awful I felt. I thought Parker must feel just as awful. After 2 days of being sick and Parker just not getting any better and he still had a fever I decide to take him in for my own benefit.... more then 2 hours of sleep. He was put on an IV and later that day he was given and NG tube (feeding tube). The first night was ok because we slept really hard. In 24 hours we slept for about 20 hours.. only waking up when his vitals needed to be checked. Turns out he had influenza. I thought oh that's not that bad, but it is. It takes a long time to go away. When babies, small children and the elderly get it it can be very serious. It can cause pneumonia and can even be fatal. There were no antibiotics he could take so we just had to ride it out. I think next year I'll get our family the flu shot.

Parker is taking corn starch now in his bed time bottles. He still isn't sleeping the entire night through. He gets up once or twice still. I think after a year of sleeping 4-5 hours your body gets used to it. I still don't think I've slept the whole night through yet, unless you count the hospital.

Anyways I wont ramble on too much. Parker is healthy and as happy as ever. He is walking and talking and generally a pretty busy kid. He loves playing with his brother and playing outside.

Things really are getting easier. When I found out he had MCAD I was scared to death. I thought this was going to be so hard and if the rest of his life was like the first few months there was no way we were going to make it. Pretty dramatic, I know. But it really has gotten easier. I've been so lucky that he hasn't get sick once a month. Once he starts sleeping thought the night things will be almost normal.

Weight Gains and Extra Hours

Meeting with Metabolics at Children's Hospital June 16th 2010

Thank God!!! Our dietitian was changed!!!! Hurray! I really really really didn't like the other one. She was very judgmental. I know doctors are supposed to judge you, but she made it really obvious. She also accused me of having an eating disorder. Needless to say, we were very happy to hear we wont be seeing her anymore.

Parker didn't gain very much, I think it was a pound and a half since the last meeting with them in January. He is just over 18 lbs. They said he can now go to 7 hours of sleep. This made me very nervous and I don't think I will be letting him go over 5.5 hours until he hits at least 20 lbs.
When we saw them in January they told me to stay at 4 hours due to his lack of weight gain. And since he is only a pound and a half bigger, I don't feel comfortable going that long. She told me to do what feels right, because I have been doing a great job so far. I love her.

We also discussed his diet. Our pediatrician had told us to feed him fatty yogurt, avocados and put a bit of whipping cream in his cereal to help him gain weight faster. Our dietitian isn't thrilled and things because he has such a hard time breaking down medium chain fats, overloading him may not be a good idea. Plus, it's not really helping. So we are now replacing the fat with carbs. Lots of breads , potatoes and pastas. He is enjoying it, but Parker just enjoys food in general.

We had the usual blood test done. They took extra to send to my pediatrician and the hematologist. We are due for a blood test for them soon, so I was happy they took it then and I don't have to go back there in a few weeks. I hope that they can figure out whats going on with his blood. The unknown high red blood cell count is starting to scare me worse than MCAD. At least MCAD I can treat and I know whats wrong with him.

Parker got his 4th tooth in the other day. I wish I had camera batteries... he has had one top tooth for a week or so. He looks like a little hillbilly. Now that the fourth one is in it wont take long for him to look normal. He is walking around the furniture and once in a while stands by himself. It wont be long until he is walking. His first birthday is next month. I cannot believe how fast time has flown. It feels like last week I was finding out about MCAD and that my brand new baby might have it. The amount of stress and appointments has made this year feel like a month, but I am so thankful he is alive and I know how to keep him safe and healthy. Despite how I want him to be my baby forever , the older he gets the easier MCAD is to deal with.

Children's Hospital

What a roller coaster.
Parker and I just got out of the hospital tonight. I don't think I have ever been so mentally and physically exhausted in all of my life. Parker's "cold" was gone.. or so I thought. A few days after his cold went away we thought we were out of the woods. His cousin came in for the weekend as planned and we all had a lovely time. They left on a Tuesday and Parker seemed to be doing great besides the lingering cough. On Thursday evening around 6 pm Cody was feeding Parker some baby cereal. Parker started coughing and then threw up everywhere. I was a bit concerned, but thought the coughing triggered a gag reflex. After a while I noticed he felt pretty warm. I took his temperature and it was a little high, but not super alarming. I breast fed him and he seemed to be eating fine. Within 6 hours he was a zombie. He was lethargic and his fever had gotten pretty high pretty fast. At 1 am I decided to take him to my local hospital. I thought about taking him to Children's Hospital but I didn't have a car, and I felt bad calling people to take me there in the middle of the night. So I called a cab that took me the 13 blocks to my hospital. Once I was there I gave them my emergency letter. We were seen very quickly and they tested his blood sugar. It was fine and he was eating fine. By 1 pm Friday afternoon we were sent home. I felt kind of uneasy, because he still had a fever. It wasn't super high but it was there, and no one had an explanation for it. At home I watched his temperature every hour, and fed him every 2 hours along with some polycose in a sippy cup. I called the metabolics team at Children's Hospital and told them what was going on. They said I did the right thing and as long as he was eating fine I was ok. But if the fever continued I should come in. I should have packed everything up and left right there, but he was eating fine. I had stayed up for 2 nights straight just so I wouldn't sleep through the alarm again.

By Saturday night I knew something was wrong, and was stuck with no money and no car to get out there. First thing in the morning we arranged a ride and a baby sitter for Jackson. We got out there and went straight into the ER with our emergency letter in hand. The ER staff said we should have called first and also called metabolics. I explained that this is all very new to us and didn't know that I should have called, I had a lot going on and phone calls were not on my priority list. Once we were in there they ran a bunch of tests. They checked his blood sugar, which was a little low, but not too bad ( because he was eating fine and every 2 hours) they took a blood test, urine test and a mucus test. They took his temperature which was 40.5 (104.9). After the blood test came back they told us he had a blood infection. He was put on an IV and give a saline/sugar solution. We were sent up to the Paediatrics wing of the hospital and met Parker's physician. He explained that Parker had a blood infection that was cause by strep and put him on some antibiotics. That was the scariest thing I have EVER ever EVER had to deal with. The parade of doctors, tests and needles was a shock to the system. BUT, that was only the beginning.

The next few days were filled with tests, needles and a whole bunch of stress for mom. Parker has always had trouble with blood tests. His veins are tiny and collapse as soon as the needle is in. The first night, his IV was in his left foot. That fell out around 9 am Monday morning. We tried his right foot and got that one in. On Tuesday morning my doctor came in and said Parker could be put on oral antibiotics and go home. About an hour later he came in and told us we couldn't go home and needed IV antibiotics for 3 more days. I was devastated. His IV lasted about 16 hours and fell out around 2 am Wednesday morning. We had some IV nurses from the nursery come in, they decided to put the IV in his head (they do that a lot with newborns because it's the biggest and easiest vein to get in to). This did not go over well with either of us. It was horrible to watch ( I helped hold him down), it bled and made it nearly impossible to breast feed. Not to mention Parker is nearly 9 months and can crawl and can reach up for the silly thing dangling from his head. It was SO hard to keep that one safe. The next morning at 8 am my nurse came in to check on it and told us to watch for swelling which would mean the IV fell out. He then told me the snot test was back and he also had Rhino virus and were now having to put Parker in respiratory isolation. Every time a doctor or nurse came in they had to wear a gown and a face mask. Not even an hour later after Parker woke up from a nice nap, I noticed he looked like a neanderthal!! His forehead was swollen so badly! So we tried again. This time in his right hand. FINALLY!!! That was the best one by far. It lasted almost 36 hours until about 8 am. When it fell out in this morning I had a break down. An IV team came in and tried his left hand and his left foot(again) and could not get it in. They dug around for a while and I could bear it. They gave up and decided to ask my doctor if Parker could get a shot of the antibiotics instead of an IV because he only had 2 more doses left. The doctor came in and said it was a great idea and we would be going home. Cody and I packed up and were ready to go. We waited 2 hours and our doctor came back in, with more bad news. He said the shots were too painful and too high of a dose to give in 2 shots. It could cause a hematoma and possibly another blood infection. The IV nurses came back in and tried to put an IV in his other hand and foot again! I had to leave before the nurses came in. I had dealt with enough needles for a life time and could stand watching them dig for veins in his tiny hands and feet. They said to Cody that they wanted to do one in his head again, but they would wait a little while to see what the doctor had to say. I was getting pretty stressed because he was already 5 hours late for his medicine and I thought for sure this would only prolong our stay. Parker looked great and was definitely on the mend. He was trying to crawl, playing with toys and smiling at everyone, even after they jabbed him with needles. But him feeling better was making it harder for me to keep the IVs in and be with him all day long with no one there for most of the day to help me. I was out of the room at the time but apparently my nurse, Ali, was stepping up to bat for me. She went over the resident doctor and asked the attending doctor if it would be ok to give him 4 smaller doses instead of 2. The doctor asked about the IV and she said that both Parker and I have been through enough and we had been told twice already that we could go home. She told him that they could NOT get the IV in and putting one in his head was out of the question. The doctor agreed with her and decided to give him the 4 shots. After that we could go home and come back the next 2 days (Friday and Saturday) for another round of 4 shots and then he would be finished all of his antibiotics. Within an hour that was done and we were on our way home.

I know this is a lot of information but we were in there from Sunday morning to Thursday evening. He had blood sugar tests done three times a day, endless temperature checks and many many needles. My main reason for posting this to prepare parents for their first stay at the hospital. To be completely honest it was very scary and very stressful. I have never been so tired in my life, and not just physically tired. It was a long time for me to be trapped in that room and being alone for most of the day. I was so scared for Parker, I missed Jackson like crazy, I missed Cody and missed being home. The ups and downs of being told I was going home and then not going home and all the medical information that was thrown at me was overwhelming. I didn't have many visitors at night and was really lonely. Children's Hospital is also the most depressing place on earth. You don't want to smile at anyone walking down the hall, because you have no idea what they have gone through that day. I tried really hard to put it into perspective that other parents are going through a harder time than me and I should be thankful. But it is so scary and upsetting to see your child go through that and not being able to do anything about. I felt so helpless. I had my fair share of breakdowns and I cried more in 5 days that I have in the last 5 years. Even Cody, my rock, broke down and cried. It's absolutely amazing how your mind shuts down and you deal with everything for your child. And when you know they are safe and going to be ok or you are alone you finally breakdown and every emotion you should have felt but didn't comes rushing at you all at once.


I am so happy Parker is safe and almost perfectly healthy again. I know now to trust my instinct. If I had listened to it, I would have had him in there right after we left our local hospital. I am so thankful for all the doctors, family members and friends who were there for us and supported us when we needed them the most. I don't think I could have done it with out them. I hope we don't have another scare that like again any time soon. I don't know if I could handle it.

There's a first for everything

We saw the Dr.Robertson on Wednesday. She said his weight gain was no good. He gained half an ounce in two weeks. She wants him plumped up so she told me to feed him avocado, full fat yogurt and whipped cream!!! Needless to say, he is enjoying his new diet. We mix the cereal as normal, with our formula and polycose mixture (he is getting extra polycose right now because he is sick) then we add a bit of whipped cream... yummmm. He's not a huge fan of avocado, but we are going to try harder after he is better. Right now I am just giving him whatever he will eat to avoid a trip to the hospital.

We have another doctors appointment in two weeks so I will probably update on his weight gain then. He is currently 17 lbs 2 ounces.

Today is day 3 of Parker's first major sickness. He was sick once so far, it was a slight fever and a stuffy nose. A few days later he popped a couple teeth out. This cold so far is different. He has a very flemy cough and a very runny nose.

I am a wreck. I came down with the cold the day before Parker did. I woke up on Tuesday morning and both my boys had runny noses, fevers and were coughing their heads off. Ever since then I am soooo sleep deprived. I have to feed Parker every 2 hours. The first night I set an alarm. I do not remember turning it off, or if I fed him. I woke up and cried my eyes out. I felt like the worst mom in the world and actually wanted to take him to the hospital just so I didn't have to feed him every 2 hours because I was so sick and exhausted. So for the last 2 nights Cody and I have slept in shifts. I found this much easier. I would stay up all night feeding him every 2 hours and reading in between. Then around 6 or 7 Cody would get up and take Parker. I only got to sleep about a 4 hour stretch, but it was much better than worrying all night long and not knowing if I was going to wake up. Cody feeds him some solids in the morning so I get that bit of extra sleep and I had a couple naps with him while Cody had Jack. Luckily today I woke up and felt much better. Jackson is feeling a bit better too, but the cough he has sounds pretty harsh. Parker's cough sounds exactly the same and he is still pretty stuffy. He is napping a lot and the fever is almost gone so I think he may be on the mend. I sure hope so. Their cousin is coming into town and I hope they will get to see each other. It seems like everyone is getting sick these days so I am trying my hardest to keep them healthy. I don't feel like I dealt with him very well this time, and I can't imagine what I am going to be like when he gets the stomach flu and has to go to the hospital. But I can't keep him healthy all the time, so I'll try and worry about that when the time comes and not right now. :)

Here is a pic of them both crashed in my bed, enjoying the humidifier. Poor little sickies

Hematology Woes

Another busy week of appointments. He was weighed at baby group last Wednesday and was 17 lbs, which equaled NO weight gain for a week. He did start crawling though, so it wasn't a huge worry. We saw Dr. Robertson on March 22nd and he was doing pretty good. He gained a few ounces. We see her again in 2 weeks.

Wednesday the 24th we went out to Children's Hospital to see the hematology clinic. Parker's blood has been coming back with a high red blood cell count. Not alarmingly high, but higher than a normal baby. * Note: This blood stuff at this point has nothing to do with his MCAD... that's fine * I was pretty upset too because they had not gathered together his blood tests from Lion's Gate Hospital (3 blood tests since birth) so they only had half of the test to look at and come up with the cause for it...which at this point is "unknown".
I am pretty frustrated with Children's Hospital these days. I really really try and not take it for granted. Children's hospital is a half hour drive and he gets the best care in the province. But on the other hand I feel like they could really try and communicate better. The metabolic clinic NEVER updates the next appointment with other specialists, so when I meet these new doctors they want Parker's detailed history since birth and all his blood work and other medical paper work that I do not have. Like my Pediatrician, who did not receive Parker's info until AFTER my appointment with her. She got it in the mail.... the MAIL!!!! It's 2010!!!! E-mail it!!! Fax it!!!! Better yet, give it to me so I can take it to all of his appointments. What am I supposed to do, come in and take notes?! All this medical stuff they are saying to me so overwhelming I don't even know where to start and I wouldn't understand it if I wrote it down myself. I don't understand any of it at all as it is!!

Wow, that got out of control.
Anyways..
We got Parker weighed, measured, temperature and blood pressure taken. Then a specialist came in and gave him is usual poking and prodding work up. Testing his reflexes and checking everything out. I can't remember her name but she had a crazy accent and I couldn't understand half of what she said. She explained how she didn't have all of Parker's paper work but his red blood cell count has slowly gotten higher since he was born. It could be cause by a bunch of things ranging from dehydration (the orginal assumption) or not getting enough oxygen (smoking, carbon monoxide poising, asthma) to Polycythemia and congenital heart disease. None of which sounded good to me. But it could be nothing and will be fine and level it's self out in a few months.
Dr. Woo I think his name was, sat down with us and explain that his high cell count could be caused by a number of things... again. We heard the same thing twice. And then he explained that because he didn't know what is causing it we are going to watch him. There a a few tests we can do, but most are very expensive and very painful, such as bone marrow tests. So we are going to "wait it out". Then he sent us to get ALL of our blood work done and we were sent home. We come back again in 3 months for more blood work, and then we see Dr.Woo in 6 months. Unless the next blood tests come back even worse.

I am trying not to worry because it could be nothing. But when I go in there and I hear this and a bunch of scary sounding disease and told to go home and "wait it out" it makes me want to throw up. So now I am waiting, sweating and practically hyperventilating every time I think about it. So I think I am done thinking for the night.

Mess ups = Good news

I went to my doctors yesterday, thinking it was time for my appointment. Turns out, I was a week early. DARN!!! But, my doctor is awesome!! She took a quick look at Parker anyways.
After weighing in, finally some good news!! Parker has gained more weight in 10 days than he has in the last 5 weeks!!! A whole 10 ounces!! That's an ounce a day!! Must be his new feeding routine. More real food, more formula and less boobs on demand. He is really starting to enjoy the formula. I think it's because I came up with a recipe. 120ml water, 2 scoops formula, and 1 scoop of my special ingredient, Polycose!!! Polycose is a powder that tastes like sugar and we are supposed to add it to a bottle or food when he is sick and needs more energy and stuff to breakdown. 3 scoops of Polycose and 120 mls of water is what they want us to use when he is sick. During the last week and a half I have been using my recipe, and now Parker LOVES his formula. The Polycose makes it taste more like breast milk and less like powdered milk. With the recipe I make, he is not getting the entire polycose dose, but that's ok, because he isn't sick. But I feel good giving him a little extra stuff in his food, and I know he is getting enough energy in his body to use. I add my formula/polycose recipe to his baby cereal and in a bottle or sippy for him to drink while I feed him cereal. Then he gets a breast offered after his meal.

Finally he is gaining weight again and I feel much better about the whole thing. Appointment with the blood doctor is coming up... not looking forward to it, but hopefully we will find out whats going on with his blood tests coming back dehydrated. This little guy is a trooper for sure :)

Parker Austin

I wanted to share Parker's life with other parents of kids with MCAD. Especially the parents with new babies and who are probably scared to death, just like I was. I cannot stress enough that MCAD is a totally treatable deficiency!

Parker Austin William was born during the worst heat wave Vancouver has ever seen. He graced us with his presence on July 28th 2009 at 6:52 pm. He was a perfect 7lbs 5ozs and 20.5 inches long. He was awake and alert and latched on the first try. We were sent home at 7pm on July 29th. His big brother Jackson was very happy "his baby" was home. He slept for 4.5 hours that night... little did I know, it could have killed him. I spent the next two weeks taking care of him as any new mom would have. And living by what my mom always said, " Never Wake A Sleeping Baby." It scares me to death every time I think about the first 2 weeks.. because I don't even know how many times I could have lost him, just by letting him sleep.

On August 11th, I got a phone call from our doctor, telling me Parker needed to go back to the hospital and get more blood work done. That afternoon I took the little guy up there for more blood tests. While I was there, my doctor came to see me. She gave me a stack of papers and told me to read it all very carefully. She said she wasn't 100% sure, but his newborn screening came back with a positive test for MCAD deficiency. She explained as best she could what MCAD was and how I could treat it. She said in her entire medical career she had only seen one other case. We talked about his treatment plan, which at the time was only to feed him every 3 hours and to take him straight to the hospital if he got sick of refused to eat. Then she sent me home to wait for blood results.

I went home shocked, scared and with a million questions. I walked in the door crying my eyes out and told my mom everything and handed her the papers. After the shock, I did what any normal parent does... I didn't put the baby down, and I researched everything I could until my eyes hurt and I was so tired . I tried to be smart about my research, because the effects are plastered over the beginning of every website, it scared me to death... but I kept remembering that those effects will happen if the disease is NOT treated. I told myself over and over " we are treating him, he will be fine.. we are treating him, he will be fine." It's is so hard not to scare yourself while looking up diseases on the internet.

On August 20th 2009 we had our first meeting with B.C Children's hospital. His blood test had come back again positive for MCAD, so the needed more blood to send to a special hospital in Seattle.
We again went over his treatment plan and they explained in great detail what MCAD is.

This is a summary of MCAD that I come up with:

MCAD deficiency stands for Medium-chain acyl-coenzyme A dehydrogenase deficiency. We digest and break down a bunch of different chain fats in our body and turn them into energy. Parker is missing the enzyme in his body that breaks down the medium chain fats. Since he cannot break down that chain, he cannot go a long period of time with out food (fasting). If he doesn't eat frequently, his body will run dangerously low on energy, which could send him into a metabolic episode (kind of like a diabetic) such as seizures, coma, liver failure or death. These symptoms can happen very rapidly, so I also have to watch of for vomiting and lethargy, as they can be warning signs of a metabolic episode. MCAD is very dangerous when he is sick. The body uses up more energy when it's sick so Parker has to eat even more frequently than his normal frequent eating schedual. MCAD usually presents it self in newborns or children once they start sleeping through the night, or when they are sick and can rapidly get worse almost undetected.
Untreated MCAD can kill 25% of suffers in the first metabolic episode. Out of the remaining 75% ; 50% of them would most likely have brain damage. MCAD is genetically passed through both parents. We are both carriers of the disease, and every time we have children we have a 25% chance the baby will be perfectly normal, 25% chance the baby will have it, and a 50% chance that the baby will carry the disease. One out of 10,000 - 12,000 (although some sites claim it to be 1-17,000) live births will have MCAD, making it a rare disease. It has only been screened for in British Columbia since 2003. There have been many cases of MCAD related deaths before and after 2003, as a result of not screening for it in certain places. It has gone undetected in some teens and adults and has claimed many lives. I was lucky enough to live in a place that screens for it, and provides the newborn screening. MCAD is a silent killer. It is assumed that 1% of all SIDS deaths are MCAD related.
When treated, MCAD patients can lead normal, healthy lives. Babies with MCAD will be put on a feeding schedule which can be adjusted in time depending on weight and age. They are given a dose of L-Carnitine several times a day, which breaks down and clears out any medium chain fats. They are given polycose (like a sugar) when sick or in need of energy. They are given emergency letters that tell hospital staff what to do if the baby or child is sick and not eating. They are closely monitored through their childhood and anytime they are sick.




On September 24th 2009, our blood tests from Seattle were back and MCAD was confirmed. I spent that evening crying and hugging Parker. I have never been so disappointed, happy, relieved and scared in my entire life. All my feelings were so conflicted. I was so upset that he really did have it, I was relived we knew what it was, happy that I could keep him healthy and alive and scared that I might not be able to keep him healthy all the time.

November 20th 2009 was our second meeting with the metabolics team at Children's Hospital. We started him on Carnitine, took more blood, and went over all the protocols again. I left there feeling much better about the whole thing. 14 lbs 12 ozs

January 6th 2010
Another trip to children's hospital. This time for a routine EKG, Echo and an ultrasound of his liver and kidneys. This is to make sure his organs are functioning properly and are not enlarged. He was great!!! He smiled at all the doctors and never cried once. They said he was the easiest baby to give an ultrasound too. He made me very proud.

January 26th 2010
Our first appointment with our Pediatrician. Dr.Robertson is amazing. She is a very sweet woman and very concerned for us. Unfortunately, Children's hospital hadn't sent over Parker's information so she was very confused on why he was there. It's was a long appointment of me explaining everything since Parker's birth. Starting solid foods!!!

February 24th 2010
Another meeting with Children's hospital. His medication dosage was changed and we took another blood test. :( 3 needles We discussed his eating pattern and solid foods. The doctor was very upset with me for feeding him less than an ounce of water... apparently water does nothing for him so I should not feed it to him. They are concerned about his weight gain and would like me to feed him more and see a lactation consultant.

February 27th 2010
Children's hospital called, Parker's blood test came back saying he is Dehydrated!!!! More blood tests done at Lions Gate hospital :(:( 5 more needles

March 1st 2010
Appointment with Dr. Robertson to discuss blood tests. Apparently he is more dehydrated and needs to go in and get more blood tests and be seen by a blood specialist. Our plan is to feed him more often until we see the blood doctor and get those results back. Weight 16 lbs 8 oz.


Parker is now 7 months and is developing great. Despite the slow in weight gain, he is doing wonderful. He loves his big brother, he loves to eat and is a very bright and happy baby. I will update this as much as I can after every big appointment and milestone. I know we are not out of the woods yet, but Parker is already proving to be a fighter.