Update: July 23

Ian is doing a little bit better.
They are decreasing the pressure on the ventilator a little every 4 hrs. The ventilator is still in a special mode described in yesterdays post. But the pressure is down from 38 to 20. So much better.
Ian wakes up every once in a while (often when he hears me talking) just enough to move his arms and legs...they had to put restraints on his arms :-( ... he doesn't open his eyes though. (Not sure he can with the doses of pain meds he's on) Yesterday, whenever he woke up a little he would destat. Today he isn't destating when he starts stirring, but they do still give him some extra drugs (madaz and morphine ) on top of what he's getting in his iv (morphine and chloral hydrate - The continuous infusion of chloral hydrate is a study we agreed to be a part of). 

As I was talking to the intensivist today he said Ian is responding well to treatment and they are hoping to extubate him Friday... Of course when in intensive care you never really know. The docs try to give a time frame, but in my experience, most often...dare I say every time... the plans change. ;-)  So not really counting on Friday, but still hoping  :-)   

Here are a few pics of Ian today. He is a little less puffy than yesterday ❤
Can't wait to see this guy smile again ❤

Update July 22, 2014

A quick update for those who are wondering how Ian is doing.

Ian has improved slightly...his lungs sound a bit better, but Ian still has very very sick lungs.  That's what the doc (fellow) said during rounds today.

Ian's oxygen levels go up and down, depending on how relaxed he is/if he's trying to fight the ventilator. 

The ventilator right now is keeping his lungs inflated. (pressure of 38) If they let much air out, Ian's lungs collapse and his o2 levels drop quickly, then they have had to take him off the ventilator and bag him by hand to get his o2 back up. The intensivist said Ian's lungs are very tough to inflate, worse than he's seen in about a year...the stollery gets critical patients from all over north america.  Right now they are keeping Ian's lungs inflated for 3.6 seconds and only letting air out for 0.3 seconds... So not much. Normal is letting air out for 3 seconds (I think).   

We are so thankful Ian is in the stollery :-)  The drs and nurses here are amazing! They are ready answer my many questions, quick to explain things. They are friendly and personable. When things get intense in the room someone always asks how I'm doing and if I know what's going on.
A big Thank-you goes out to these loving and dedicated people. 

We thank our all sufficient God. He is with us through all this, and we trust His plan is best. God is love.
In Gods love is the best place to be. ❤

Ian is in the picu.

For our family and friends that do not have facebook, the last 24+ hrs has been rough around here. Our Ian is in the hospital again, this time for respiratory issues. 

Here is an update:
Please pray for our Ian. He went into emergency Sunday morning with labored breathing. They admitted him because things were not improving with treatment. The Dr. In emergency said he has Bronchiolitis.
 Over night his breathing became more labored and he was getting very tired. By early morning they called the rapid response team for Ian as his oxygen was too low (he was on oxygen already). They decided to put him in  the PICU. (pediatric intensive care unit). Once there they sedated him (being on so many meds before he took a bit to sedate) They put in another iv, intubated him (tube into his trachea - just above the lungs), put in an art line (for measuring blood pressure, and getting blood gas samples), and tried to put in a central line unsuccessfully. Poke...poke...poke...poke...poke it takes a few pokes with Ian because he has had so many iv's in his life. Then Ian started waking up and fought the ventilator trying to breathe on his own. By doing so he collapsed both lungs. His oxygen went down to 15, it should be 100. All of a sudden there were drs and nurses everywhere. Eventually they were able to get Ian's oxygen back up by 'bagging' him. Ian needed 80% oxygen, and the ventilator was at 38 for pressure. The dr said to get the lung bypass machine. (ECMO - is an extracorporealtechnique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function - Wikipedia.)  While they were bringing it down the RT and Intensivist decided to try a different mode on the ventilator. ( a mode not usually used on babies/children)  It worked! The ECMO is now parked just outside his door.  We are really hoping he won't need it... They medically paralyzed him for now. He was not destating so much when I left. The Intensivist in the picu said Ian is acting like he has pneumonia. I haven't talked to the dr after Ian's last xray (1 yesterday 3 today). But I'm sure I'll chat with him later. Thank-you for all your messages, texts and support so far  God is good.


Updated July 26 2014

Summer! 2014

   

We love summer around here, the splash parks, lazy days (haha...), big thunderstorm's, campfires... I could go on and on :-) 

Pool time! We've had a few hot days! 

Popsicle's from Opa and Nana! Yum!  

Learned something new! I still sit with them as they eat, but they hold the bottles themselves now :-) 

We bought a loft bed for Lydia a while back, in hopes that Matthew could make the bottom a 'double' bed for the twins...it still needs some extra bars and stain yet, but it's coming together nicely :-) Saves so much room this way, and can easily convert to a regular bunk bed, or back to a loft bed.

Minion birthday party for Miriam and Dylan at the splash park by our house!!

Miriam sharing her birthday present from Grandpa and Grandpa. 

Moose horns at Montana's :-) She's 7 now! 

These two boys smile so easily! Makes for lotsa cute pictures.

We walk 2km of this trail. Trying to walk there 2x a week - wanna join us? :-)

I carry Ryan in the hiking child carrier, Ian and Lydia ride in the stroller and Miriam and Dylan walk :-)

Dylan graduated Kindergarten! 

We are trying something new this year! All the books are in. I opted for pre-made lesson plans to simplify things :-) We are so excited to start! Miriam REALLY REALLY wanted summer school... um, nope, Mom doesn't! lol 

Shopping with 4 kids 5 and under can get challenging, but I'm always up to a challenge :-D They are pretty good anyway.

Love my kids. 

The twins enjoying the backyard. They weren't sure what to think of the grass. 

A walk in the river valley when Miriam and Dylan were in school.

These are delish!! (I'm a sweet tooth!) Try them! Tip: Grate the sweet potato finely (that way your kids will never notice!)
 Recipe courtesy of my Mom. (I'm not sure where she found it) 

Mmm This is what we make for lunch on Sunday (we have company almost every Sunday for lunch) 18 eggs, some grated cheddar cheese, a tub of cottage cheese, spinach, a pkg of bacon, tomatoes, garlic, paprika, onion pdr (or gr. onion).  Bake in a crokpot (4-5hrs on low) or in the oven in two 9x13's or make into 'mini quiche's' (muffin tins) 350 till not jiggly (I think 1/2 hr? but I have never timed it lol)  We serve it with buns. 

They are both doing so great now! Our little miracles. 

Gardens 2014

We are excited that most of the landscaping we had hoped to do here is done :-)  I have veggie gardens and flower gardens, pots, perennials and annuals... I'd love to have more perennial flowers though, maybe in the next house :-)   
Here are some pictures of a few of our gardens this year :-) 

TTTS Laser Ablation Surgery May 2013

Last post I promised to write again in a week... I didn't. Sorry. I am now though :-)

So picking up from where I left off last post - We were in Toronto for surgery, we had spent the day at Mount Sinai Hospital having an (all day) ultrasound. They dr's decided not to do the surgery, and we had been given a complimentary night at a nearby hotel.

The next day we headed to dr R's clinic.  Hungry again since I wasn't allowed to eat since midnight again in case they did the surgery that day. We spent the morning in the clinic having ultrasounds, by early afternoon the dr's decided we could wait for the surgery till after the weekend. The reason they were waiting was because the doner (Ian) had a Velamentous cord insertion. ( Here is an explanation I found from Wikipedia: Velamentous cord insertion is an abnormal condition during pregnancy. Normally, the umbilical cord inserts into the middle of theplacenta as it develops. In velamentous cord insertion, the umbilical cord inserts into the fetal membranes (choriamniotic membranes), then travels within the membranes to the placenta (between the amnion and the chorion). The exposed vessels are not protected by Wharton's jelly and hence are vulnerable to rupture.)  
This condition made the TTTS laser ablation surgery even more risky. And since we had just found out we were having twins about 2 weeks before we didn't know how long the babies had TTTS. Also, very rarely TTTS  'fixes itself' and there is no need for surgery. We were all hoping and praying we wouldn't have to have the surgery.

Knowing now that we would be spending the weekend in Toronto we left the hospital, found a place to eat, (Whew! I really didn't like this fasting thing...)  Then we called up one of Matthew's cousin's (and family) who lives near Toronto to see if they would have room for us Friday night, Saturday and Sunday. Yup, they had room :-) (I was excited to meet them.)
I then called a couple friends to see of they could take the kids for a few days. Up until then My sister was taking care of them during the day, then Matthew's parents would take over for supper and the evening. When my sister came back from work she would take over babysitting again, and the inlaw's would go home.  We only expected to be gone a few days and since it was going to be longer than that, we decided to find a place for the kids to go. Two of our friends said they would take our kiddo's (Lydia was only 1yr and 3mo at the time - it was hard to be so far away). Thank-you to everyone who took care of our kids!
  After the phoning, and blogging Matthew and I found a shopping center, bought some Sunday clothes, toiletries, a bit of food, and a suitcase (we had packed light and didn't have enough stuff for the weekend).  The mall was packed. We were in the middle of Toronto on the Friday afternoon before a long weekend...
We then headed to the 'go train'(?) station to find a bus. Then we were off for the weekend.
We had a great time over the weekend, mostly relaxed on Saturday, and Sunday we went to church. Thank - you to all those who were so welcoming!
On (holiday) Monday Matthew's cousin drove us to the hospital. (Thank you!)
We went to the hospital for another day of ultrasounds (I had been fasting since midnight again). It was Monday that the dr's said they saw a slight change for the worse. They decided to wait till Tuesday to do the surgery. We left the hospital late morning, found a place to eat, and then found a hotel. The hotel generously agreed to give us a discount on a room for a night (same hotel that gave us a complimentary night). We then walked around the city, relaxed and dare I say - enjoyed ourselves :-) At this point, though we were nervous about the upcoming surgery, we were less stressed than we expected. Actually, we were fairly calm. The peace that surpasses all understanding! God is in control, that is SO comforting!
Tuesday Morning (fasting again...sigh, you'd think a woman with twins would be allowed to eat...lol) we walked to the hospital, they did an ultrasound and decided that yes, now there was definitely a difference. I was admitted, then we waited till it was our turn for the operating room.
Below is a picture of the surgery we were waiting for.

The top right shows the size of the instruments used.  

When it was finally our turn (I was starving!) we headed down to the operating room. The dr's weren't sure where they were going to make the incision till just before they did. The placenta was strange (long) and they weren't sure where the separating membrane started (it was stuck to Ian) and they didn't want to puncture it, or hit the placenta.
  They didn't freeze anything except the small spot where they made the incision to put in the 'sheath'(?) that they put the instruments in/though. The nurses(?) set up a video monitor for us so we could watch the whole surgery as it happened! That was really neat!
Matthew and I were praying during the entire surgery, we really wanted to 'keep' both boys, but we both knew whatever happened, God's will was best.
They made the incision, (OUCH! I didn't expect it to hurt! Kind scared me for a min, but then it didn't hurt anymore)  added some fluid to the sac, and then our monitor turned on! The amniotic fluid was foggier than I had expected, and so many 'floaties' in it. we caught a glimpse of Ryan, saw the separating membrane (it was still intact), and then the placenta. The drs counted the connecting blood vessels twice, then started to laser them. they went back and forth counting and checking quite a few times. Then when they were done they asked if we should take a look at 'baby b' (they were in Ryan's sac) Yes! We wanted to see him! :-) We could see his hands, body and yup, he was a boy! haha! Then a quick pass by his cute little face. Then our monitor turned off. The drs took out the excess amniotic fluid, and taped me up (no stitches!). I was brought back to my room. So far both of our babies were doing great!
Matthew was allowed to sleep in my room (even though it was a shared room!).

Below are two of the pictures the dr's took of Ryan's hand and foot. It was much clearer in real, but these pictures were printed on regular paper, and then I took this pic of that paper with my phone. lol

The next morning we went to have another ultrasound. Both boys were doing great and Ian even had more fluid already! We went back to our room and waited to see if the dr would discharge me. While we were waiting one of Matthew's cousins popped by to say hi.  Late afternoon on Wednesday, the dr discharged me.  Matthew and I headed back to the hotel and got a (discounted again!) room because we had to go back to the hospital on Thursday for hopefully the last ultrasound in Toronto. We relaxed in the hotel room, had supper and went to sleep.  We went back to the hospital in the morning and both boys were still doing great! The dr's told me we would be 'lucky' if the placenta lasted till 30 weeks (the norm for this surgery/TTTS) since Ian's part was strange and his portion of the placenta (20-30%) would likely not be able to last. They gave us our ultrasound and operative reports, told me to take it easy and we were off. I called the social worker back in Edmonton, and she found us a flight for that afternoon! :-) We packed up and headed home :-D
Little did we know that the placenta would last until 34 weeks, I would have weekly ultrasounds from week 23-34, I would have heart echo's, I would be in the hospital for 2 1/2 weeks, and have a C-Section.
 Ryan would be 4lbs 6oz when born, he would be in the hospital for 2 weeks (That's it! crazy boy!) and come home at his birth weight.
 Ian would be 2lbs 11oz when born, he would have 3 surgeries,  spend 14 weeks in the hospital (total). He came home at 4lbs 4oz the first time, and then 6lbs 6oz the second time. Ian would take 20 weeks to reach 7lbs.
Now at 9 months both boys are happy, healthy, eating, sleeping and playing cute little boys.

We are thankful and truly awed by the greatness and mercies of our God and Father!
God has not only brought us through this, He gave us a peace that many dr's and nurses noticed, and commented on. They called it calm.




Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus
Philippians 4:4-7

A Year Ago...

A year ago yesterday at around 8 am, I left for the hospital to have my second ultrasound that pregnancy (after finding out 5 days earlier there was not 1, but 2 babies in me ❤ ) So exciting! I had always wanted twins. :-)
During the ultrasound the tech was fairly quiet. Then the tech left, and came back in with few drs.  They talked about baby 'a' looking very squished, and that he didn't have very much amniotic fluid, and something about baby b's heart. After over an hour (2? I don't know) I was ushered into a room with a whiteboard, and a table and chairs. The Dr. Came in and told me that our twins had something called ttts, he explained what it was and that our babies would likely die. We had one of 4 choices.

1. Have an abortion and try again. (that's what he said...)

2. Try a partial abortion - kill baby 'a' in hopes of saving baby 'b' (baby b (Ryan) at this point had an enlarged heart and didn't look  great because he was getting way too much of everything. Baby a (Ian) looked pretty good, except that he was small, and had dangerously low amniotic fluid.)

3. Don't do anything and see how the boys do (They would likely die, or be born very early. If we didn't do anything, they expected do a c-section soon...I was 20 weeks. We would likely loose one or both after birth)

4. Fly to Toronto for a risky surgery.

I was at this point trying my hardest not to cry (I don't normally cry in public.) I quickly said 'Toronto, I'll go to Toronto!' Then the Dr. left and said he would send the social worker in to explain more to me.
As I was sitting  in the room alone waiting for the social worker, I was thinking about so many things... 'Matthew would have to stay home with the kids and I would go alone. I really didn't want to go alone, but I wasn't sure how we were going to afford one plane ticket to Toronto, two would be too expensive for us.  When I would be leaving?  How long I would be gone? How much it would cost?
My babies will likely die... I really hope this surgery works, I really don't want to loose my babies! ❤'
By then I was crying. The social worker came in with a box of tissues (She was incredibly sweet!) She sat down and then she started tearing up.  She explained that Alberta health paid for 2 tickets to Toronto for me and another person for support,  as well as a taxi to and from the hospital. I would have to pay for accommodations, if we needed them (the support person likely wouldn't be allowed to stay in the hospital). I would be gone 3-4 days.
 Whew! I wouldn't have to be alone! And the flights are paid for, that sure took a load off my shoulders!
The social worker then brought me back to the waiting room, then she left to check which flights were available asap. I texted my sister, who was babysitting my kids to let her know I'd be late. I also called my hubby. He said he would come to the hospital asap.
The social worker came back and gave me a few options for flights. I picked the latest one - the red eye, arriving in Toronto the next morning. This way I would have a little more time to find babysitters for our other 3 kids. At least it would save us on one nights accommodations :-)  I was then ushered to a clinic in the hospital  for the heart echo's on the twins.  During the heart echo's Matthew texted me and said he was going to move our van from where I had parked it (of course I had parked in the 2 hr (or was it 4 hr?) street parking as I has assumed I would be back in time. We didn't even get a ticket!... But the parking patrol guy was a few cars back... Lol Matthew quickly moved the van just in time! (For the many ultrasounds I had later, I only made that parking mistake one more time and then I decided to not risk it, so I just paid for parking).
Matthew then found the clinic I was in for the heart echos and the nurses let him in the room. The tech was great! He let me text and didn't mind that Matthew came in partway through the echos. He also didn't mind that we talked while he was doing the echo.  :-)  The Dr was great as well. She said she had worked with the Dr in Toronto that did the ttts surgeries and assured us he was one of the best :-)  After the echo we went back to meet the social worker who had our flight info and some info on the hospital we were going to in Toronto. Then we went home. It was 4pm. We arranged babysitting for our 3 kids, packed our bags, I wrote a quick blog post and then we were off to the airport.
The flight to Toronto was the most uncomfortable flight I've had, I slept about an hour. Once in Toronto we found a cab and went straight to the hospital. (Whew! That was one crazy cab driver...or maybe they all drive that way? That was my first time in a cab.)
We spent the entire day in a room at the hospital having an ultrasound. I hadn't eaten since midnight because they were possibly going to do the surgery that day. The Dr's decided at 3pm to wait till the next day to do the surgery. We were directed to a social worker who was able to get us one complimentary night at a hotel, then we found a place to eat.

I'll do another post next week - the day the did the laser ablation sugery. :-)

Pete is Ryan, the recipient.  He was the bigger twin that had  70% - 80% of the placenta and he was receiving blood etc. from Ian through the connecting blood vessels in the placenta. Ryan had way more amniotic fluid than he should have, and an enlarged heart.
 Repete is Ian, the donor.  He was smaller and had very little amniotic fluid, but otherwise looked healthy.
Before the surgery the main concern was for Ryan since he was in the most danger. After the surgery the main concern was for Ian since he has such a small portion of the placenta. The portion that Ian did have was 'strange' and the dr's were surprised it supplied him enough nutrients to last 34 weeks.

The pictures below  are not of the twins but they show how the twins looked.
 Ian and Ryan are identical since they shared one placenta, but they did have a thin separating membrane.