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.

Easter Sunday.

Fun with photos.

A few fun photo colleges.
 I've been having a little fun with my pictires lately.

MOMMY IM TUT!  Haha this kid gets stuck in the strangest places.

Coffee with a friend

A friend came over for coffee last week and snapped a few pictures. Thanks! We love them

See them by clicking this link:  https://juliennelapid-slomp.exposure.so/de-boer-twins

January and some of February.

There isn't a whole lot new around here. Matthew has been chipping away at some of the reno's we are working on. He also was recently promoted at work  :-)
I've been trying to get things organized around here in-between diaper changes, feeding kids/babies and keeping up with the cleaning/tidying. Sleep seems to be a big topic with me for the last little while here...  I've always been able to function fairly normally even if I have little sleep, but I guess almost 2 months of 3hr or less increments of sleep, and not being able to take very many naps is really starting to take it's toll on me. I'm trying a few things to help Ian sleep better, so far I've been able to get him to stop waking every hour after 3am, (thanks to all my facebook friends tips and suggestions!) but I'm going to keep trying to get him to sleep longer.
Miriam is doing well in school, and when she is home she loves to read, watch tv, take care of the twins, play outside and does a few household chores. She lost a front tooth this past week and is pretty excited about it! (she has lost a few on the bottom row, but the top is apparently more exciting lol)
 Dylan is growing up so fast! He comes up with the strangest stories that are quite entertaining. He does a few household chores now - more when he was participating in the coin race at school for the mufu home during Manna week at school last week! ;-) He loves reading, and building things at home.
Lydia is becoming a really great helper for me, always willing to help, she puts dirty dishes in the sink, helps me empty the dishwasher, cleans up stray socks her siblings leave around the house. Her vocabulary seems to be growing daily, she has also learned to 'count' to 3. We have tried a little bit of toilet training... but she doesn't seem to get it... she will NOT pee on the potty or the toilet. but fairly soon after she gets off she'll pee all over the floor. She is pretty shocked when she pees and starts yelling to me that there is a MESS!!  haha... I think we'll wait for a bit and try again in a few months lol.
Ian is now a whopping 10lbs 5oz! We have tried a little rice cereal and it made him a little constipated (I think this is good... all the other formulas and my breast milk that we tried earlier just shot through him and he didn't break down or digest it). He was a little gassy for a few days after though, but I'm not sure if that was from the immunizations which he happened to have the same day (duh! I should have tried it a different day... oh well) I'll try some rice cereal again soon and see how he does :-)
Ryan is now 16lbs 9oz! What a porker! lol He reminds me of Miriam when she was a baby. She was (until now) my biggest baby. Ryan has rolled over back to front now, loves to babble and continues to be a very content and happy baby.

Watching baby einstein 

So cute to see such a small baby playing with toys.

Since Mom's nap was unsuccessful Lydia thought she would try...

Little Ryan LOVES the bouncer! 

Fell asleep in the bouncer awww! 

Aww! 

Weigh day! 

Lydia and Dylan wanted to be in the picture too! 

Big helper! Lydia LOVES these little boys SO much! And they love her. 

Some twin time  - no secret language!! 

A TALL tower!

Smiles

Starting to see that they are identical

Giggles!

Cuteness! 

Dylan's evil grin... You see that bruise on his upper arm? Lydia has started defending herself by using her sharp teeth! 

They really DO love each other! 

A fun game. 

Run down the hall, around the coffee table, and then back up the hall and touch the door. Repeat. 

Best. Game. Ever.

Two bouncers!! Ian needed a stool to bounce haha! 

My boys! 

Dad of twins... 'nuff said. 

Ryan is a little too big for this sleeper....Dylan wore it when he learned how to walk... Oh boy! Dylan wasn't big, and was walking all the time at 9 1/2 months. Ryan is almost 6 months (4 1/2 corrected) and far from walking lol. 

A big muddy mess in the house in February...

Follow the trail of dirt

Matthew dug a sump pit recently - we REALLY hope this means we won't have any water in the basement anymore. In the coming weeks he will be working on putting in the pipes to pump the water outside.  

A pretty deep hole (the reason it's all dug out on the left is because he started there and then ran into a drainage pipe...

Miriam do you want to go in?? 

Yup, pretty deep 

Okay, take me out now. 

Lydia helping me clean the fridge.

Cutie

Entertaining the twins.