I'm a real boy!

Hi all!

Sorry I haven't been keeping up with my journal posts, it's been super busy here at Mac! Yesterday we started my final feeding plan of every three hours. That means I feed for an hour and then fast for two. This is the feed schedule of most babies! All my doctors are very happy to see me on this plan. Most importantly my glucose levels have been the best they've been in a long time! I had a 5.7 today :) All checks have been over 4 as well.

Since my feeding and sugars have been so good, I've been able to go for long walks around the hospital! Yesterday I went to visit my friends in the genetics labs. They live in a distant drab looking part of the hospital that I was sent to on the first day I was here. I got to see Dr. Kozenko and Dr. Potter. Also while I was there I saw Christina who was the lady who called my mom and told us to come to Mac in the first place. Everyone was sooo excited to see me out of my room! Dr. Kozenko is still calling me the miracle baby as I continue to marvel and confuse the experts. We had a great visit in genetics and most importantly we stepped outside just for a moment and had a breath of fresh air.

Once back in my room, my uncle Brian and Grandpa Philp stopped in for a visit. Now that my cords are to a minimum, both of them got to hold me for the first time! I was very well behaved and really enjoyed my time with them. I also got a sweet Pooh blanket and card from Bri and a Pooh bear from Leslie.






Kate, my OT came to see me and assess my muscle tone, head control, and talk a bit about my plan. She said she would like to try to do the bottle test next week again since I don't make sense to her. I hear there's a lot of that going around. So far my tone and head control are pretty good.

Meghan our regular resident came to tell us that the plan is for me to continue my feeding schedule and go for one last full blood gases test this afternoon. Once that is normal I will go down to only periodic glucose checks. If I behave over the weekend, I may be ready next week to get discharged! However I still haven't gained any weight, I have been sitting at 3.15 for the last week. Maybe my dietitian, Amy will be by today... I have been honoured with a few of Emerson's outfits as I am the "younger brother". It's been a pretty sweet deal!

My plan for home will continue to be regular glucose checks. I'll have a nurse come by to prep and administer my unique cocktail of vitamins. I'll be coming back to Mac for checkups and to visit Kate to work on my mouth skills. My pump will come with me and I'll keep my feeding tube but I'll be able to go for walks with mom and have more regular visits and a more normal home life.

Will keep you all posted on the plan as it continues to progress.

Thanks again for everyone's thoughts and prayers!

Yummy Chalky Barium

Yesterday I had to go in for the"swallow test". They sat me in a chair that daddy said looked like drop zone at canada's wonderland. They had some troubles strapping me in as I am a little man. Finally the contraption was made so I could sit without falling out of the chair. Mommy was real proud of me, as I was content and calm through the whole thing. She had to put on this massive heavy "gown" to protect her from the xray machine. I got my own piece of protection as well. Mommy was instructed to try different nipple flows and thin and thick formula. They had mixed the formula with barium so they could follow the liquid as it entered me.

Kate, the OT assessed me as I swallowed. She deemed my swallow as "inefficient". The liquid would pool in the pocket above the breathing and swallow tubes, however I would usually get the liquid out before it would enter the lung tube, but it would take me a couple of swallows to push it out. At one point a small bit of the thin formula went to my lungs. Kate will talk to my pediatric Doctor, Dr. Oravec, to discuss what my plan should be.

Daddy took some pictures of the whole ordeal, however he used Emerson's mom's camera and is a little tech newb.

Mommy's being outfitted in her giant robe, which weighed more than her!

Kate and Mommy trying to figure out how to affix me in this chair! I'm too tiny!

Hey it's me!

Mommy trying to feed me... hmmm don't think it's working!

Aspirated so I am done!

Yum Yum Barium!

Amy, my dietician added a few things to my formula yesterday. So we will see how this one goes, hopefully I will start putting on weight, as I have been stuck at 3.15kg for a while now. My parents are contemplating feeding me quarters or using another scale!

Within dark times there is always light.. My central line was heparinized last night so now I can leave my hospital room between feeds! This is good for 24-48 hours, then my line need will be revisited by my doctors. My parents took me for my first walk, which I promptly fell asleep for... Oops!






Dr. Tarnopulski ordered some blood to be collected from me for the Copper test. It had to be done intravenously rather than my usual capillary. Which means I was stabbed in my hand. I knew I had to upstage mommy's blood getting, so I was happy through the whole thing!

Enter Felipe

I have been an angry baby for the last few days, mommy and daddy have been trying everything to get me to calm down. Change me, play with me, leave me alone, soother, check my temp. They started talking about my feeds, wondering if maybe I wasn't getting enough feeds. Yesterday's weigh in was a fluke I did not gain my weight! That 0.05kg must have been some extra poo or water weight, since I am now back down to 3.15kg. I haven't gained weight this week, so they checked with nurse Heather to see if they could up my feed from 35mls to 40 each feed. She checked with the resident, Felipe who said "Yeah sure". So my feed was increased this morning. Mommy had an uneasy feeling the whole day as she was now worried that she may blow up my tummy from too much fluid. None of my regular Dr.s were here for the whole weekend and she was scared that the decision from Felipe may have been too hasty.

I went through the day on more food and things were pretty uneventful with my insides. Katarina, Jackie, Bob and the boys came to visit. They brought us all a big care package full of books, movies, and sweets. Dad has stuffed himself on peanut butter squares!

Dinner time rolled around and we were invited to join the Rutledge family for Chinese food! Meanwhile my insides we're getting ready to send up red flares. I cried the blues for nearly an hour before Nurse heather came in to check my sugar and it was down to 3.4. As per the protocol we did another check 15 mins later and it was 2.7!!! Now this was the lowest read in awhile but mom and dad did their best to keep their cool. We checked again after my feeds and I was back up over 4. Phew!

Mommy and Daddy talked to nurse Heather regarding my crying. She said it was likely due to my low blood sugar level.. This sent up worries in my parents, they are now wondering if when I cry I have low blood sugar. Around 10:30pm I was still crying my eyes out and my parents were still worried about my feeding level. Mommy was particularly upset because unlike a bottle/breast fed baby who stops eating when full and continues eating when hungry, I cannot make that decision as I am on a feed pump and have my feed numbers mathematically figured out for me. What if my body is trying to grow but I am not getting enough food? I am on the same amount the Drs figured out 2 weeks ago.

Mommy and Daddy were freaking so the nurse had the resident, Felipe come talk to us about our concerns.... He said that there is a mathematical formula to figure out what people's fluid intake for the day should be based on the person's weight. He said for Ethan's weight he should be at 70-80mls an hour. We told him that Ethan is at 17.5 plus meds. So around 25 mls. This is a huge problem! Felipe said he would check over the notes to see if metabolics left anything about how they came to the rate. He came back and said that there's nothing really written in there but the team would talk about it in the morning. However, metabolics isn't in until Tuesday. AHhhhhhhhhhhh! On friday, my metabolics doctor, Dr. Potter told us that he was on call the whole weekend and that if we need anything to get someone to call him. We told Felipe this and he was very reluctant to make the call. My daddy asked if there is an issue calling people on call as this wasn't the first time we ran into this issue. He asked Felipe wouldn't it be better to call Dr. Potter and get the answers right then rather than waiting until Tuesday, as it was only 10:30? Felipe agreed and called the Doctor. Dr. Potter asked to speak with Daddy so that we could ask all the questions we had. Turns out Felipe's math skills are bad and I am actually on the high end of fluids for my weight. Dr. Potter also said that crying is the opposite of knowing if I had dangerously low blood sugar and that we would know for sure just by looking at me. My body would start to shake uncontrollably, I would go to sleep and you wouldn't be able to wake me and I would break out in cold sweats. Dr. Potter reassured that he is not concerned about my sugar levels as they have always gone back up so far. He also said that he doesn't have too much confidence in the glucometer machine they use here as its just a hand held machine. Apparently it doesn't have good accuracy under 4. It is the most accurate between 4-5. Which are the "normal" levels. He told daddy that whenever the machine reads a "low level" that we can request for the glucose to be checked at the lab instead. This requires a tube of blood rather than a drop, so we think that's why they don't order it every time. Daddy thanked Dr. Potter and mommy and daddy were able to sleep for part of the night.

I think I may be Superman!

4 weeks...

hi all,

ethan here again, using the blackberry again while we wait for a new wifi option.

started the day off right today with yet another scary low blood sugar!  i was down to 2.7 according to the lab results.  this sparked a little worry among the lab guys and i was required to endure a second bloodletting today.  as usual the extra heel poke didn't phase me.

nurse heather was on today but it appears she doesn't move as fast as the weekday nurses.  poor emerson had a seizure at 7:45 and she was standing outside the room.  she was talking to another nurse and didn't see the assistance light flashing over our room. Dad ran out to get them and made sure Emerson was ok. That was scary!

We got our replacement morning meds around 10. The vitamin C didn't make it until almost 2! Mom and dad are now in charge of mixing and administering my feeds and meds! Quite the responsibility.

Spent most of the day hungry and grumpy and crying more than my fair share. To make it better, mom and dad both played with me lots! Dad played rocket ship with me and mommy sang I'm a little tea pot :). I was very happy about the attention but peed on mommy anyway.

As a special gesture, dad went out to get a cake made for me and Emerson that reads "Happy one month birthday Ethan and Emerson" on it. I know all the adults can't wait to dig in. Maybe if my sugars drop again I'll get some icing :)

Well I'm hoping for a good night tonight as I don't think my mom and dad can take much more of this.

Love to you all!

P.S I finally got my bath! The nurse brought me a shallow bowl so I could sit my bum in it and get a nice wash! Oh I feel so clean!

Mayday! Mayday! Hospital Internet is down!

The hospital network is down for the weekend, blackberry to the rescue!

Thursday:
 took some formula from the bottle at my 6pm feed, 25 mls. My parents stopped me as they didn't want to push me, however i could keep going because i loves it! The rest of my feed went through by pump.
8pm feeding and meds debaucle begins! The staff changeover time is at 7:30 and the nurses have to get vitals on each of their 4 patients before starting to take care of things like my foods and meds. It was 8:20 before my nurse, Donna got to my room with my formula and meds. She squirted my meds in the bag and tried to start the pump. Now since the Drs have me on bolis feeds the amount of formula that gets mixed with my meds is significantly less, the feed bag got clogged! I was screaming my head off as I was hungry! Finally she grabbed more formula and got that going at 9pm. Since my meds were wasted, they had to use my morning meds as the Pharmacy closes at 9pm and reopens at 8am. It was going to be close as my meds were scheduled again for 8am. They dumped my meds in more formula and had to re calculate my times, amounts and plan. There were no dr.s on staff, so I was lucky that my daddy is good with numbers and came up with a plan for me, that only had an extra 14mls going in to me. My nurse was really flustered, and didn't do my vitals, weight or bath. She remembered to do a glucose check on me and instead of using gauze to clot my wound she used an alcohol wipe instead! My level was 3.7, which is under my threshold so I need to be poked again, probably because I haven't eaten in 2.5 hours ... 30 minutes later I was down to 3.4, my sugar was plummeting my parents started freaking out. Nurse Donna tried paging Dr. Kozenko as Dr Potter was not on call until midnight. My parents ordered another sugar test 30 minutes later, sugar level was 4.2. Since everything was out of whack, mommy and daddy stayed by my side the whole night to make sure that the plan was followed. Daddy slept a little and mommy kept her steele eye look on Nurse Donna the whole night. We haven't seen Nurse Donna since....

Friday:
In the morning my meds were not up from pharmacy so I didn't get them until 10am. We decided to put them in syringes and shoot them through my feed tube while the formula is going through. Since my feedings got out of whack last night my parents didn't try bottle feeding me as the plan was supposed to be. Kate the OT came to see me for the bottle feed this morning. I coughed and she started getting red flags from this. She said to try again in the afternoon. She came by for my afternoon feed and put a halt to my bottle feeding as she noticed that this time I was holding the formula in my mouth then swallowing, she is concerned that I may asphyxiate myself, and has set up a 'swallow test' for Tuesday afternoon. This test requires me to sit in a chair surrounded by ultrasound equipment. They let me drink from a bottle that has formula and barium inside so they assess the swallowing to make sure there isn't a blockage and that the valves are working correctly.

Dr. Tarnapolski came by and requested mommy to have a blood test to see if she is copper deficient, meaning I wasn't getting enough copper in utero. He said it's a long shot but things are not making sense to him in my case. As some of you know Mommy has 'problem veins' and most of the time no blood comes out so she has developed a fear of blood clinics. However she said she'd be strong for me and went down to get it done.

I had some visitors today! Grandma Philp came to see me, and dropped off a small container of vegetables and dip as my mommy has been craving them. She also gave my mommy a nice necklace in the shape of a key that says 'mom' with diamonds. My mommy really loves it and will wear it all the time! Glenn and Joanne came by as well! They brought me a stuffed dog that looks like their dog Bonnie, I like her, she is nice and fluffy!

I was weighed tonight and I am still sitting at 3.15kgs . I also am patiently waiting for my bath.....

Enter the Bottle!!

Ladies and gentlemen we have achieved bottle feeds.  Now not to get ahead of ourselves here but yesterday afternoon I took in 7ml by bottle (and wore 7ml more) and today I just ate 13ml!  This is fantastic and my OT Kate is thrilled.  So the new plan is feed for 1 hour, fast for 1 hour.  My feeds have been adjusted to 36ml in one hour from 18ml in one hour to make up for the pauses.  Mom and dad have asked for a list of things to watch for in improving my feeding ability.  This is one HUGE baby step on the road to going home.

In other news, mom found me a Fischer price crib-side aquarium that plays some sweet classical music.  My Grandpa and Wayne are coming to visit today and probably take mom and dad to dinner. 

Please continue to pray for me and my roommate Emerson.  We're both making great strides and the nurses and doctors are very pleased.

Introduction to Occupational Therapy

Hi All, Ethan again.

We made the big move yesterday and are now happy roommates again with our old pal Emerson.  This has helped to reduce stress levels in both the Reimer and Rutledge camps.  The only scary part of the move is that the previous room occupant was "in isolation" and apparently we are not supposed to touch the curtains in the room as they haven't been cleaned.  The room also has this creepy wood paneling and a chair/bed that smells like rotten fish.

I am still puking, and since I am off my D50 when I do I have to have extra glucose checks to make sure my sugar levels do not go dangerously low... This adds up to extra heel pokes.  The Dr.s are a little concerned by my puking episodes, however they seem to understand the reasons I may be doing it.

The Occupational Therapist was in today to see me.  We tried all sorts of exercises to assess my head control, reflexes, alertness and tone.  She will read over my history as well to make a decision on whether or not I should try to take some formula from a bottle today.  She will be back in the afternoon after she makes her decision.  In addition to possible bottle feeds, I am also getting an updated formula that uses similac and MTC oil.

Now I know all the books, magazines, and experts say that babies only smile because they have gas.  Well, although I can't say I'm gas free, I do smile from time to time just because I'm content! 

My night was fairly good.  Dad slept at my side and our neighbours are the friendliest and quietest we've had during our stay at Mac.  Since noise wasn't going to wake me tonight, I decided instead that I would have some sleepy poops and wake my self up! 

All in all, we're still making great strides on the road I call life.  Thank you all so much for your continued support and prayer.  I need to take a moment though and ask you all to think and pray again for another.  My roommate Emerson is still having seizures.  We feel so much for him and his parents and are with them every step of the way along this journey.  Please include him in your prayers for us.