Ian and Ryan's Story - A Scary Time

On Wednesday Sept. 4^th, when Ian was 11 days old, a nurse noticed that he seemed uncomfortable and his tummy was swollen, so they called the doctor. He instructed the nurse to slow the feeds down, and I stayed most of the day with Ian because he seemed so upset. It was really hard to leave him that evening because I was sure he wasn’t feeling well.

Thursday was Matthew’s first day back at work since the birth of our twins. Thankfully his boss was very flexible and Matthew was told he could take as much time off as he needed, which took away the stress of worrying about work through all this. Since everything seemed to be going well Matthew figured he might as well go back to work now, he had had 2 weeks off already, never mind the week he took off for the emergency trip to Toronto earlier in the year.

When I got to the hospital Thursday morning, the nurse filled me in on what had happened while I was away. Ian’s stomach had been pumped and there had been about 3 feeds worth of milk in there. No wonder he was so sore! The doctor had taken Ian off feeds and they were about to do an x-ray as I walked in the door. After the x-ray the doctor put Ian back on feeds since he hadn’t seen much on the x-ray. Ian cried almost right away after they started the feed pump, so the nurse stopped it and called the doctor again. The doctor that came to check Ian again had just arrived for the day, because they had just done a shift change. She did another x-ray. At that point I stepped out of the NICU to meet our minister and his wife who had arrived to see the twins. By the time I got back in the NICU with the visitors, the doctor informed me they would be transferring Ian to the Stollery Children’s Hospital immediately so he could be watched closer and possibly have a surgery.  My little 2lb baby may have a surgery?! Do they survive surgery when they are that small? After a short visit, we (the minister, his wife and myself) stepped out of the NICU, sat down on some chairs nearby, read the Bible and prayed. (I read later in the first operative report that Ian needed to be resuscitated just before going to the Stollery. I assume this was just before I came back into the room after visiting with the minister.) After the minister and his wife left, I went back into the NICU. The transport team was there moving Ian into the little ‘stork 2’ incubator crib used to transfer babies. Once Ian was settled and all the tubes and pumps were placed properly, they wheeled him out and away to the ambulance that would bring him to the Stollery.

I stayed behind to snuggle Ryan for a while. Ryan’s monitors had been beeping often while Ian was in pain. I think Ryan knew something was wrong with his twin. Unfortunately, during all the busyness of trying to get Ian out of this NICU and off to the Stollery NICU, Ryan was due for a feed, so a nurse had started his feed pump… because it was so busy she had not double checked the milk’s ID tag with another nurse and had accidentally started pumping into Ryan a syringe of breast milk that wasn’t mine. Another nurse noticed it, called over the nurse who had started Ryan’s feed, she stopped it immediately and called the doctor. While I was with Ian I had noticed a little commotion around Ryan and after Ian left I went over to hold Ryan. The doctor that was on, and the nurse that had made the mistake, came and told me what had happened and apologized– the poor nurse was so sorry she was crying. I hugged her. I was much less worried and was just hoping that there was some super antibodies in that mother’s milk that I may have been missing! I also hoped the poor mother whose syringe of milk they had to throw out wasn’t having a hard time pumping enough milk. The hospital had both mothers do a blood test just to be sure neither of us were carrying anything that could harm Ryan. After all this I texted Matthew and headed down to the Stollery.

Ian looked a little better since he had been off feeds for a bit, and was on some pain meds so he would settle. Ian weighed in at 2lbs 6oz, he couldn’t afford to lose any more weight. The nurse told us that Ian’s tummy was still tender and distended, and would need surgery soon. The surgeon came in to talk to us. Dr. Dicken, the surgeon, explained that from the X-Ray’s on Ian’s intestines it looked like he had something that many preemie babies get and die from – Necrotizing Enterocolitis (NEC). (NEC is a scary word in the NICU. The doctor at the Misericordia had started Ian on antibiotics in case he had a bacteria causing NEC.) Dr. Dicken could see from the X-Ray that a part of Ian’s bowel was dead, but he couldn’t see how much of it was dead, we would know more after the surgery.

 The next day was Friday. The twins were 2 weeks old! Matthew and I arrived at the Stollery early that morning. We met with Dr. Dicken and then walked Ian down to the OR.   Then we walked back upstairs and waited in the family room. Dr. Dicken came to talk to us after the surgery. He explained that he had taken Ian’s intestines out (Ian was so small he had to take them out to look at them). He looked them over, they were grey and dying, and looked ischemic (an inadequate supply of blood) He also de-rotated an incomplete rotation (A twist in the intestines) and removed the dead part of Ian’s bowels that had multiple perforations and ischemia, in total, about 7 cm of intestine, so not too much. Intestines should be pink, or at least turn pinker after taking out the perforated portion and after the de-rotation. In Ian’s case they didn’t look any better when he was done, so as a last resort he had closed Ian back up temporarily. Dr. Dicken said the pattern of blood vessels going to the intestines was strange, not what you would normally see, as if they had died off, and then quickly grown back, possibly from a lack of oxygen at some point. He said he would take a look again on Sunday, if things looked better he would do an ileostomy (the surgeon makes a small surgical cut in the wall of the belly, part of the small intestine is brought up through the cut (a stoma). The intestinal waste, then deposits into a bag that the patient adheres to the skin over the exposed intestine (stoma) and needs to change regularly.) I asked how likely it was that Ian’s intestines would look better by Sunday, he said it wasn’t likely, Ian’s intestines looked pretty bad. He had seen something similar to this before in a TTTS donor. I asked what he would do if Ian’s intestines didn’t look better when they opened Ian up again on Sunday. Dr. Dicken said nothing could be done, they would just close him up again and transition Ian to palliative care. I asked “So he would die?” Dr. Dicken nodded. Our Ian would likely not make it. The poor guy had fought so hard in utero only to be born and fighting again. “Hope for the best, but prepare for the worst” is what Dr. Dicken said before he left. We were devastated. 

Right after the doctor left a nurse informed us that there was someone there to see us, it was one of my friends, Rachel. Matthew and I were crying by the time she walked in and we didn’t say much, just introduced Ian and continued to cry, Rachel hugged us and left. Although it was a short visit, we were so grateful she stopped by, she was pretty much the only person I would have wanted to see right then. Rachel was going through an extremely rough time with her baby Maverick in the stollery with CHD (Coronary Heart Disease). Her baby wasn’t expected to survive SO many times! She understood that this place was no easy place to be, she knew what it felt like to be told your baby wasn’t going to make it.  After a bit we left the Stollery and went to go see Ryan at the Misericordia Hospital. He was still doing great, on full feeds and drinking most of it from a bottle! It felt odd to be so devastated about Ian and yet excited about Ryan at the same time.

Saturday was spent crying and praying. I visited both hospitals in the morning and when I got home my Mom was there. She had flown out from Manitoba to be with us, and my Mother-in-law had picked her up from the airport and dropped her off at our house. Later that day we headed to the church to hopefully catch the tail end of the church picnic. We were too late, they were just about done packing things up. We chatted with the last few people that were there. Later we dropped Nicole and the kids off at home and headed to the Stollery with my Mom so she could meet Ian. Mom took some pictures of us with Ian since it was possibly the last time we would have this opportunity. After visiting with Ian we went to visit Ryan at the other hospital and he had a little surprise for us, he didn’t need a feeding tube anymore! All his feeds were with a bottle. So exciting! So close to coming home. The nurses were taking great care of Ryan. Since we weren’t there to snuggle him as much, they were snuggling him a little extra while we were gone. We were so thankful for such caring and understanding nurses.

Pictures my Mom took of us with Ian before his 2^nd surgery.

Sunday morning we drove to the hospital early so we would be there before Ian went into surgery. We walked with the nurses again to the OR and left our baby with the medical team waiting to operate on our little 2lb miracle. We waited in the NICU family room for what seemed like forever. Dr. Dicken practically jumped into the room and told us the good news! Ian’s intestines looked pink and healthy! He had taken a little more off of his intestines, created an ileostomy and closed him up. We were so excited, relieved, thankful! We thanked and hugged the surgeon, then we went to go see Ian. After seeing him for a short time we headed home for lunch and had just enough time to get to church for the second service. My hair was gross and pushed into a ponytail, I couldn’t remember when I had last taken a shower, I hadn’t put on any makeup that morning since I knew that if I was either happy or sad I would be crying, and it would all mess up anyway. My face was puffy from crying and I’m sure I stank of sour milk from pumping ‘religiously’ every 3-4 hours for 30-40 minutes since the twins were born 2 weeks before. But I didn’t care, I was SO excited and thankful Ian was doing so well, I didn’t care if I looked and smelt gross! After church we went home for supper, met some visitors at the hospital who wanted to visit Ian, and then after visiting Ian I went to go visit Ryan for the first time that day.  I snuggled and kissed him double, then fed him, he was doing so well! 

Ian and Ryan's Story - The NICU Beginning

Now begins the story of my recovery, Ryan’s 17 day NICU stay, and Ian’s 2 hospital stays (65+ days in NICU, 27 days in hospital (not ICU), a PICU stay (6 days)) and other health problems.

Ian with Daddy

Ryan with Mommy

By the next morning, Saturday, I was walking around a little, trying to pump breastmilk as often as possible (not super easy). Matthew had stayed the night and took me up to see the twins as soon as he could. They were perfect. Ian and Ryan were still on CPAP, but later that morning they didn’t need it anymore. Both boys were in little ‘giraffe’ incubator cribs so they stayed warm. They were so tiny! I was allowed to hold Ryan and Matthew held Ian. By now with all of my other babies I had nursed them multiple times and was ready to go home… this time I had pumped multiple times alone in a room, and was only holding them for the first time. I was on pain meds because of my C-Section, and was not ready to go home yet. Everything was so different.

Ian (above)

Ryan (above)

By Saturday evening I didn’t need to use the wheelchair to get to and from the NICU anymore (24hrs postpartum). I was feeling great! I slept at the hospital again that night and on Sunday morning after I had walked down to the NICU to see the twins and then back to my room again (the NICU was a bit of a walk from my room), my doctor came to see how I was doing. She checked me and said my incision looked good, but I had some really bad bruising going down my legs because I was walking so much. She asked me if I wanted to be discharged that day, or the next. I chose that day. I was very happy to be leaving the hospital because I really didn’t think they needed to give me blood thinner shots in my arm anymore, since I was up and moving anyway, and it was hard to pump at the right times, and try be at the NICU at the right times, AND be in my room when the nurse needed to check me and give me meds. My doctor told me to take it easy and she also warned me to be careful when I pick up my 18 month old daughter, Lydia, when I got home. Nicole and Matthew did a pretty good job of making sure I didn’t pick her up though, they practically followed me around lifting things for me and telling me to sit down. I also taught Lydia, how to climb onto the change table herself so I didn’t need to lift her.

Matthew picked me up Sunday at 4 pm after the second church service. It was weird leaving the hospital without my babies. I felt empty, a little alone. Matthew drove us to the church just in time to catch the tail end of the birthday party going on for Opa H. After the party was over, we headed home, put the 3 kids to bed, then Matthew and I headed to the hospital to drop off my pumped milk, and see our twins. Nicole was still helping us which made it easier for us to visit the hospital two times a day. Ian and Ryan were so tiny and cute. I wanted to hold them both and snuggle them for hours, but they were in separate stalls in the NICU. Holding them together would be impossible since their IVs and monitors wouldn’t reach far enough to bring them together in my arms.

We had so much to learn: what all the beeps on the monitors meant, how to change such small babies, how to hold them without cutting off their oxygen, how quickly they got cold, how to operate the beds, what all the IVs were for, when I could and couldn’t hold them, how each and everything affected them (Ian’s heart rate often jumped up to the 200’s when he was angry), learning how to use the hospital pumps, and so much more! I had to learn so much in such a short time while trying to recover from having twins that it was overwhelming. Both of the twins’ mouths had been swabbed every few hours with my pumped colostrum, this way they were protected by my immune system. They also had been receiving breast milk from the milk bank since all I could get out was colostrum, but by Sunday my milk had come in and they could have little bits of my breast milk every few hours. Ian began receiving human milk fortifier in my breast milk to help him gain weight. Both boys had IVs, Ian’s was in his umbilical cord because his hands were too small for the IVs. Since neither of the boys were nursing or being bottle fed yet, they both also had feeding tubes. Ryan pulled his out multiple times while he was in the NICU, he really didn’t like them.  Over the next few days Ryan graduated to an open air crib and did very well, while Ian needed to stay in the incubator crib for the heat and to be under the ‘billi’ light for his jaundice. Matthew and I visited twice a day, once with the kids, and once alone in the evening.

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Ryan with his older siblings Miriam (6) and Dylan (4)

Lydia (1) and Daddy peeking at Ian

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Ryan and Mommy. (Photo credit - Sherene deBoer Photography)

A day or so after I got home a health care nurse came to see me and check my stitches. She gasped loudly when she saw how bruised I was. I explained that my doctor said it was because I was walking so much so quickly after the surgery, but other than bruising it wasn’t damaging anything. My incision looked great. 5 days post-surgery I stopped taking my pain medication because I noticed that I produced more milk while not on the pain meds (a good reason to keep a pumping journal, which I did). At a week and three days old the twins were transferred to different hospital with a less intense NICU because they were doing so well. By 1 week and 4 days old neither of them needed an IV for fluids or nutrition anymore, and Ryan was starting to take some milk from a bottle. All the echoes, X-Rays, ultrasounds and various tests came back great. Things looked promising. Ian was 2lbs 8oz, Ryan was 4lbs 1oz. We had had many visitors those first 10+ days. We also had many meals made for us and lots of offers for help. At this point I was feeling really great for being just under 2 weeks post-C-section, rolling over in bed was much easier, and I was able to walk around and do most things as much as normal. Although my babies weren’t at home yet, I still had to wake up at night – I needed to pump every 4 hours for 30-40 minutes day or night to keep my supply up. Driving back and forth to the hospital and home again, trying to pay enough attention to all 5 kids in 2+ different places, having no real schedule for anyone, and just trying to recover from a C-Section was stressful and tiring. I wasn’t able to nap during the day, so the sleep I got at night was all I got. (I was usually home from the hospital at 11pm or 12am, went to bed, pumped at 3 or 4am and was up again at 6am to get the older kids off to school.) I’m sure I would have gotten more sleep and had a more relaxing time if everything had been alright, and my twins had come home with me on day one.

Sometime early August we had found out that the school our children were going to attend (grade 1 and Kindergarten) wasn’t going to have a bus driver for our route. We lived 20-35 minutes from the school and it was the opposite direction of the hospital our twins were at. We had no family or close friends that were able drive both our kids every day to school. We asked around for help with this in our school and church community. Just before school started I was in contact with two of our neighbors, one of whom I had never met, they had heard from one of our mutual friends (Dana) about our transportation predicament. Those two women and one of my friends (Laura) offered to drive when they could. They were a big help! During the school year it turned out that we would have intermittent bus service, usually never knowing from one week to the next if we would have bus service at all, so besides those first few weeks, we were never able to make any firm plans with anyone regarding school drop-off and pickup. I was usually scrambling around trying to find a ride for the kids, or I would pick them up myself while trying to pump, feed and change the other kids in the van. Those were VERY hard days. Some of the biggest help came from that same friend (Dana) who had found those two ladies to drive our kids when they could. Dana also organized meals for us during the week so I didn’t have to cook supper, which most often I didn’t have time for. Those drivers and meals were MUCH appreciated!

Ian and Ryan's Story - The Twins Arrive!

 During a somewhat uneventful hospital stay we only had a few times during the non-stress tests when Repete’s heart rate dropped a little too low and twice they called the doctor. I had a planned C-Section at 34 weeks exactly, August 23, 2014. The placenta was breaking down and none of us wanted to risk either of the babies dying in utero. At this point they were safer out of me than in.  The C-Section was my second time in an OR that year – and although I had an epidural before during the birth of 2 of my other children, I was insanely scared of getting the spinal block, and was also scared it wouldn’t work. As it turned out the spinal block worked just fine. (Although they are similar: both require a needle poked into your back and medication to stop pain, a spinal block is a little different than an epidural.)  Matthew was allowed in the OR once I was settled. I asked if they had a screen so I could watch the C-Section but they didn’t have one, bummer. I could just see the reflection in the huge operating light, so I watched that. I told Matthew when to take a picture with his phone above the sheet blocking my view just as each baby was taken out. Immediately after they were born they were brought into an adjoining room and assessed there; Matthew went with the twins.  Ian (who had been Repete) was born first at 2lbs 11oz (1210 g) and Ryan (who had been Pete) was born 3 minutes later at 4lbs 6oz. (1990 g) Ian had an Apgar score of 5 at one minute and then an Apgar score of 8 at five minutes, and a head circumference of 29cm. (An Apgar score is used to help healthcare providers quickly evaluate a newborns physical condition (0-2 points for each Appearance, Pulse, Grimace, Activity, Respiration) Lowest score being 0, highest score being 10). Ryan had an Apgar score of 9 at one minute and 9 again at 5 minutes and a head circumference of 31cm. They both needed a little help breathing. Ian had mild retractions and respiratory distress (Mild difficulty breathing causing retraction in the belly), and was put on CPAP (CPAP is a machine that uses mild air pressure to help prevent airway closure), with room air (no extra oxygen). Ryan was grunting and required resuscitation and was put on CPAP, with room air. I was closed up and wheeled into the recovery room. The nurses took each twin to see me in recovery before heading upstairs to the NICU. After that I amused myself with my floppy legs. I thought it was a neat feeling, haha! I tried to see if I could still will my legs to move even though I had the spinal block… nope I couldn’t.

Ian and Ryan's Story - The Wait.

After we got home I had weekly ultrasounds at the hospital. Sometimes I had to fight to get them weekly – it was recommended by the doctors in Toronto as well as the online TTTS support sites we were a part of. Weekly ultrasounds are to watch blood flows in the brain, heart and umbilical cord. This way they can see many things, one of which is if the placenta is breaking down. They also measured the amniotic fluid and checked the babies’ bladders to make sure the blood vessels on the placenta hadn’t reconnected, or new ones hadn’t connected. If they had, we would need another TTTS surgery, or the babies would need to come out early via C-Section. I also noticed on the TTTS support sites that seemingly the farther you were in the pregnancy, the faster the TTTS affects the babies. So I was worried that if the blood vessels did reconnect we would need to know ASAP. They checked the size of the twins and gave us approximate weights bi-weekly. The twins’ fluid pockets never completely evened out but now Repete had enough, and Pete didn’t have too much. Pete’s heart was back to normal a few weeks after the surgery (2 echoes later). Pete remained the bigger one and Repete the smaller one throughout the pregnancy. Because the placenta was split somewhere around 20/80% - 30/70%, Repete still had something called SIUGR - selective intrauterine growth restriction, which basically means he was growing slowly in utero, and he was smaller than 90% of babies his age/gestation. (‘At least 60% of the 4 million neonatal deaths that occur worldwide every year are associated with low birth weight caused by IUGR. (Wikipedia)’.)  From my research Repete had something called Symmetrical IUGR which is less common (about 20-25% of IUGR babies). His was caused by having such a small portion of the placenta and as a result he was getting less nutrients/oxygen etc. than he needed to grow at a normal rate. The doctors in Toronto told us to expect the twins to be born at 30 weeks at the latest – my membranes would likely rupture at or before then. They didn’t! I believe I inherited membranes of ‘steel’ from my Mom who gave birth to one baby in a sac! Ouch!

 Right around the 30 week mark, my 16 year old sister Nicole came to help me until the twins were born. Often mothers are put on bed rest for the remainder of the pregnancy after TTTS surgery. This all depends on the doctor and how much they believe the bed rest will help the twins grow and stay in utero. Since I didn’t want to be put on bed rest, I was happy to have the help with the house, the other three kids, and have a babysitter for my weekly ultrasounds, bi-weekly doctor appointments and various other tests and appointments. (After going through the discharge papers from Mount Sinai Hospital in Toronto recently, I noticed they included an information sheet on how to cope with being on bed rest… hmm not sure now if I was supposed to be on bed rest or not…) During the rest of the summer Matthew continued to work on the landscaping around the house, that he had started that spring before leaving abruptly for Toronto. He also ripped out the carpet and helped me clean up our basement that had flooded shortly after we had returned from Toronto. We decided to continue on with the bathroom renovation we had planned to do that summer, so he gutted and renovated our upstairs bathroom, and still kept up with most of the little things that needed doing around the house. He continued volunteering at the church and school as much as he could.

At 32 weeks, on August 8th I was admitted to the Royal Alexandria Hospital for monitoring, and given steroid shots to help the babies’ lungs. At that time I was extra thankful that Nicole was here as a live in nanny, and able to take care of the kids and house during the day and again in the evening when Matthew came to visit me and run errands. She let the kids draw pictures for me and my nurses, which they brought when they visited and I proudly posted them on the walls in my room. I missed those kids so much!  I’m pretty sure some very nice people dropped off a few meals at our house during that time to make suppertime a little easier for her and my husband. While I was in the hospital those two weeks I still had my weekly ultrasounds and was hooked up to a monitor twice a day. I also met with doctors who explained things like what I should expect after a C-section, what I should expect while my babies were in the NICU (the Neonatal Intensive Care Unit in the hospital), that they would likely be there at least a week, and maybe 6 weeks depending on how things went. One of Matthew’s friends offered a wireless internet stick which I used in my room for researching info on NICU life, C-sections and wrote Facebook and blog updates. I also spent time reading, and watching movies. Although I was admitted to the hospital, I wasn’t on bed rest so I didn’t have to wear those hospital gowns and was allowed to get dressed every day, which was nice. I went for walks around the hospital, and also got day passes on Sundays so I could still go to church. It was a little weird being at the hospital even though I didn’t feel sick. 

The kids saying good-bye to me the day I was admitted to the hospital.

The kids visiting Mom at the hospital.  

34 weeks!

                                                                   

Ian and Ryan's Story - To Toronto and back.

Matthew and I arrived in Toronto early Thursday morning, took a taxi straight to Mount Sinai Hospital, and spent the day having an ultrasound. That was quite a bit of time on my back for me, I had thought the twins echoes were long… ouch. The doctor said the TTTS was stage 1 at this point so, we decided to wait on the surgery. (Stage 1 TTTS – There is an imbalance of amniotic fluid with a small amount (2cm or less) around the doner twin and a large amount (8cm or more) around the recipient twin. The amniotic fluid measurements represent the 5^th and 95^th percentiles respectively) and do another ultrasound the next day at Dr. Ryan’s clinic. (Dr. Greg Ryan is a Maternal-Fetal Medicine specialist and a Canadian expert in the field. Also, the first Doctor in Canada to perform TTTS Laser surgery (1998)) In Toronto the doctors called Repete Oli (oligohydramnios – which refers to the little to no amniotic fluid) and they called Ryan Poly (polyhydramnios – which refers to the large amount of amniotic fluid). A social worker at the hospital arranged for a complimentary night at a nearby hotel and then we went to go eat. I was starving!

Friday morning we packed up our stuff and headed to Dr. Ryan's clinic.  I was hungry, 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. 3 doctors (Dr. Ryan, Dr. Van Mieghem (Tim), and Dr. Keunen) were discussing what should be done and when. By early afternoon the doctors said the TTTS was now at stage 3, (Stage 3 – The imbalance of blood flow starts to affect the heart function in one or both babies. This is seen in abnormal blood flow in the umbilical cords or hearts of the twins) but still they thought we could wait for the surgery till after the weekend. This surgery was extra risky because both twins had a Velamentous cord insertion. Repete’s was very velamentous, this is how it was described in the ultrasound report; ‘Donor cord crosses over anterior placental surface and is very velamentous. Inserts in maternal right upper quadrant.’ 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 the placenta 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 and the pregnancy even more risky, because if they entered the uterus in the wrong spot, they could hit and rupture a vessel supplying nutrients to Repete. They had to be sure where the blood vessels were before surgery and they weren’t sure.  Also, premature rupture of the Membranes (PROM) is always a significant risk with the TTTS surgery because during the surgery the doctor pokes a small hole in the amniotic sac to insert the tools used to cauterize the blood vessels on the placenta. Since we were only at 20 weeks, rupture of the membranes could kill the twins…they wouldn’t survive if they were born at this point. Because we had just found out we were having twins about 2 weeks before, we didn't know how long the babies had TTTS, so we couldn’t tell how quickly this was progressing. Also, very rarely TTTS doesn’t get worse and there is no need for surgery. We were hoping and praying we wouldn't need the surgery, even if it meant I would likely be admitted to hospital for the remainder of the pregnancy just to watch for signs of the TTTS progressing, and possibly be flown back out to Toronto at a few hours’ notice for the same surgery we were here for now. We were told Toronto is the only place in Canada that does TTTS Laser Ablation Surgery. The doctors asked us to wait during the weekend in Toronto, and on Monday they would do another ultrasound to see if there was any progression of the TTTS.

We left the hospital, walked to a coffee shop, and talked about what we would do in Toronto for the weekend. We called home since both Rebekah and my Mother-in-law, who were taking care of our kids the last few days, worked full time and only expected to take care of the kids till Saturday. We called some friends and arranged for our kids to stay at their homes till we got back instead. We then arranged for a place for us to stay the rest of the weekend in Toronto (Matthew’s relatives Phil and Roze and family).

After coffee and food, we headed to the mall to buy a few things. We hadn’t taken any Sunday clothes, or even very many clothes, since we hadn’t expected to stay the weekend, so we bought some. We had also only taken a carry-on duffle bag for our things and it was getting very heavy lugging it with us as we walked around Toronto, so we bought a rolling suitcase – what luxury! We walked to the ‘go train’ and bussed to a stop close to the house we would be staying at for the weekend. Matthew’s cousin Phil picked us up from there. Even under the circumstances, we had a relaxing weekend with family. On Sunday we worshipped with Bethel Canadian Reformed Church in Richmond Hill. The services were encouraging, and they were such a welcoming congregation.

Monday morning (a holiday), bright and early, Phil drove us into Toronto to the hospital where I had another long ultrasound. Around noon we were still unsure if we should move ahead with the surgery, or wait… We decided to wait in Toronto for one more day. We booked a night in the hotel we stayed at late the week before. We asked if they could give us a discount. They did, and they gave us a very nice room too! We settled into our room, and then walked around Toronto a bit and relaxed. It was such a beautiful day! Tuesday morning, during my ultrasound, the doctor said he saw a slight difference for the worse. Surgery was booked and I was admitted. Surgery was today! During the surgery, they would insert a shunt with three fiber optic strands into my uterus, on Pete’s side of the sac, (right into the sac beside the baby!) trying not to puncture the thin separating membrane between the twins. This was difficult since they couldn’t see clearly where the membrane or cords started or ended. They would use a laser to cauterize the blood vessels on the placenta that connected the twins. A huge risk was that Repete would only end up with a small portion of the placenta after the surgery and most often that results in the smaller twin dying because such a small portion may not provide the baby with enough nutrients to survive.

 We waited for an available operating room, and I was starving again. Finally in the early evening the OR was available and ready for us. The OR was cold! I had never been in an operating room before. Since the surgery was to be done while I was awake I was made very comfortable with SO MANY pillows and warm blankets! Ahhh so comfy! I was told NOT to move at all! I was given a little general anesthesia through an IV, but only enough so I was relaxed; I could still feel everything. Matthew was allowed in the OR, I was so relieved! They put some local anesthesia on the part of my belly they were going to cut for the shunt and fiber optic strands. Dr. Keunen did the surgery, he changed the entry point last minute, and then cut. Ouch! I hadn’t expected it to hurt, but once the initial cut was done it no longer hurt. They told us to put on special glasses (they were using a laser after all). They inserted a tiny sheath, and added some fluid to the sac so they had more room to move around. Then through that tiny sheath they inserted the fiber optic strands, one for the eye of the camera, one for the laser and one for a light. Using an ultrasound machine and a camera to guide them they maneuvered around inside my womb. The medical team gave Matthew and me our own screen so we could watch the surgery, which was so neat! Not too many people get to see a video of their unborn children. We could see our babies as clearly as if we ourselves were taking the video! The amniotic fluid was cloudier than I expected. We prayed as we watched the doctors count the connecting blood vessels twice, and then started cauterizing each one with the laser. Pop. Pop. Pop. I can’t recall exactly how many blood vessels there were, around 11. When they were done with the laser they counted again twice, then we took a quick look at Pete, such small perfect fingers, eyes, even eyebrows already, and yup, he was a boy! We couldn’t see Repete since they didn’t want to get too close to the thin separating membrane. They removed quite a bit of amniotic fluid (Pete had way too much), then glued and taped me up. No stitches, just tape and glue. I had expected some fluid to leak out of the incision or something, but nope, it just sealed itself. Cool! So far this was a successful surgery, both babies were still alive, the thin separating membrane was still intact, no big surprises. I was wheeled out of the OR.

Left – a picture of what happens during surgery. Top right – size of the tools. Bottom right – the OR

Once in my room I asked quite a few times if I could have something to eat, and finally I convinced my nurse to let me eat the apple and drink the orange juice I had put in my purse for after the surgery – I had expected it to be late and that it would be hard to find food at that hour. Matthew was allowed to stay the night in the hospital as well.  

The next morning we slowly walked over to the room where the TTTS team does their ultrasounds. We were praying that both boys had survived the night. We were so relieved when we saw those two tiny heartbeats on the screen! Yay! Although the doctor said he saw a difference in the twins’ heartbeats, he explained that it sometimes takes a few days for the babies to adjust to the different blood flow. Repete had more amniotic fluid which meant he was peeing more, so it looked like this surgery had done more good than harm!

We went back to our room and packed up. While the doctor signed the discharge papers Matthew’s cousin Brian popped by for a quick visit. The doctor told us to stay in Toronto for the night yet, and come for one last ultrasound in the morning. We left the hospital and checked into the hotel we had previously stayed at. They gave us a discount once again…we were so thankful, since hotels in downtown Toronto aren’t cheap! We slept, I updated the blog, had supper, relaxed, and slept some more. In the morning we walked to the hospital, (after breakfast mmm, food! In the morning too yet!) This time we didn’t have to drag our suitcase along since we expected to go back to the hotel later. I had one last ultrasound, and saw that they were both still alive! We walked back to the hotel, called our social worker (who then booked our return flights), arranged for a taxi to the airport, packed up and headed home!

 While we were in the Toronto airport waiting for our flight home we looked in a few stores and found 2 cute black teddy bears with red Toronto sweaters. We bought them. They were perfect since with our second child we had started the tradition of buying teddies for every baby (usually while I was still pregnant). I loved that the twins’ teddies were bought in Toronto where the amazing TTTS surgery happened. The flight home was much more comfortable than the way there, since my tummy was actually smaller from having less amniotic fluid. Once we landed, Matthew’s parents picked us up from the airport, took us out for supper, and finally they dropped us off at home. We dumped our suitcases inside and went to go pick up our kids, we had missed them SO much! 

Ian and Ryan's story - The Beginning of a Journey

Ian and Ryan’s story.

Pictures of Ryan’s hand and foot during the in-utero surgery.

The Beginning of a Journey

Early in 2013 my husband Matthew and I found out we were expecting. We were excited to add another child to our growing family of 5. Everything was going well and  since this was my 5^th pregnancy I didn’t go to the doctor for a while. I figured, why go to early appointments? I knew the signs of a miscarriage anyway since (my 3^rd pregnancy resulted in a miscarriage).  I continued doing what I was doing. At the time, I was a stay at home Mom of 3, babysitter of 3 extra kids, and a Mary Kay consultant.

Early on in the pregnancy, I started spotting which had only ever happened to me once before and we had lost that baby. The spotting scared me a little, but after a couple weeks or so the spotting stopped. I had my first appointment with our family doctor at around 3 months. She found the baby’s heartbeat quickly, and ordered some bloodwork. Everything looked good. During the second appointment, with our family doctor she mentioned my hCG levels were high – still normal, just higher. (hCG is often known as ‘the pregnancy hormone’ as it is produced by the placenta after implantation. A higher hCG level can be an indicator of twins) My next appointment was with my obstetrician at just over 18 weeks. I mentioned to her I had been feeling like my tummy was a bit big lately, I was a little more tired, headaches were a little worse than I remember and I had some bad round ligament pain in my back – I usually didn’t get that till later in the pregnancy. She said those things were likely because this was my 5^th pregnancy. She checked baby’s heartbeat – which was good, then said I could sit up… no measurements? Odd. I asked why, she said I looked fine. I didn’t push it since she seemed to be in a hurry, and I had an ultrasound booked in a few days anyway.

19 weeks with 4^th pregnancy      19 weeks with 5^th pregnancy

 At 19 weeks I had my first ultrasound for this pregnancy. Matthew and I were seriously wondering by then if I was carrying multiples. We had looked up some of the regular signs of a multiple pregnancy, and I had quite a few. The day before the ultrasound I had taken a picture of myself and compared it to a picture of myself at exactly the same stage with my last pregnancy (19 1/2 months ago), my tummy was almost double the size this time! With that large of a difference we knew something was up. We chose 2 names (we usually agree on names easily). I told Matthew I would text him during the ultrasound if it was twins, since he wasn’t allowed to come in with me during the first part of the ultrasound. At the ultrasound clinic, Matthew waited in the waiting room with our youngest. The ultrasound technician was great.  When she started the ultrasound I watched her face carefully. I saw a glimpse of surprise. She looked a little more and then smiled at me and said, “There’s two in there” J I was SO excited! I cried. I had to reassure the ultrasound tech that I was crying because I was happy, NOT because I was sad! I texted Matthew. They were identical twins and they shared one placenta. The tech couldn’t find a separating membrane (which worried me) but she said both boys looked good (we had asked to know the genders). She couldn’t get a good shot of twin A, not to worry though, I would have many ultrasounds from now on. (We called twin A Repete and twin B Pete during the pregnancy)  When the ultrasound was done they let my husband and youngest in the room so they could see the twins as well. I had SO many questions! A doctor came in to chat with us and let us know that because they couldn’t get a good look at Repete we would have to go to the Royal Alexandria Hospital for another ultrasound next week.

The weekend was crazy: Friday I wasn’t sure what to feel and Saturday I was excited, I bought 2 books and read as much as I could. Sunday was calming, and Monday, Tuesday was spent reading and finding as much information on mo/mo twins as possible… things didn’t look to promising. mo/mo = identical twins, one sac, no separating membrane, shared placenta. Biggest risks: Cord entanglement (since they are sharing the same sac they could easily tangle their cords around each other which could be fatal), TTTS (twin-to-twin-transfusion syndrome – a problem with the shared placenta), C-section, spending most of the pregnancy in the hospital, both or one of the twins stillborn, micro preemies (born very early and as a result they could die, or be in the NICU for a long time with many complications). 

On Wednesday I went to my second ultrasound. The ultrasound was long, about 2hrs. During the ultrasound, the tech explained what they were looking for. He found a separating membrane. This was good because it took away the cord entanglement risk, (so instead of mo/mo I was actually carrying mo/di twins) but the membrane was shrink wrapped around Repete, so he could barely move, and there was almost no amniotic fluid in the side of Repete’s sac (Amniotic fluid is basically baby pee - Repete wasn’t peeing much, which means he wasn’t getting much nutrition/blood from the placenta). Pete had way too much amniotic fluid. Pete was getting too much nutrition/blood from the placenta and as a result his heart was enlarged from pumping too much blood and would soon be in heart failure. He was also peeing too much, which causes the uterus to expand much faster than normal which could trigger labor and rupture the sac much too early. The placenta was long and what they called an odd shape, they couldn’t see where Repete’s cord attached to the placenta. After the ultrasound was over I was ushered into a room and was told the doctor would be in to talk to me soon.

I was scared. All of the things I had read over the last few days flooded my mind and emotions while praying everything would be alright. My twins were alive! I had just seen their precious heartbeats! I clung to that positive thought.  The doctor came in and explained the twins had something called TTTS - Twin to Twin Transfusion Syndrome (I had read a few paragraphs about it in my books, but couldn’t remember exactly what it was). He explained that because of what he saw on the ultrasound one or both of the twins would likely die. He gave me 4 options – 1. Full Abortion 2. Selective abortion 3. Wait and see what happens (likely both would die if I chose this since Repete would die from lack of nutrients and Pete had an enlarged heart from too much blood flow and would likely die from heart failure, unless Repete died first in which case Pete would likely die from a stroke) or, 4. Fly to Toronto for a risky surgery. I jumped at the opportunity to go to Toronto for the surgery. Although risky, it was the best option I was given. The doctor left and told me a social worker would be in to talk to me in a few minutes.

Sitting there alone I felt overwhelmed. I knew very little about this risky surgery. I assumed I would be going alone. I wasn’t sure how we were going to afford the flights and other costs. My babies would still likely die. By the time the social worker came in I was crying, but she had brought a box of tissues. I was so grateful for this lady! She was so caring. She explained she would arrange the flights, I wouldn’t have to go alone, we would be in Toronto 3 days maximum and the flights were paid for by Alberta Health. (So thankful for our medical system!) After we had chatted for a bit she directed me to a clinic in the hospital where they were going to do heart echoes on the twins (heart echoes are closer ultrasounds on their hearts). While waiting in the waiting room for the heart echoes and throughout the rest of the day, I arranged childcare for our 3 other children for while we were to be in Toronto. 

The echoes took a couple hours. My husband had gotten off work early and they let him into my room during the echoes. The tech was great and let us talk about everything - so thankful for that because sometimes you aren’t allowed to talk, or have anyone in the room. Overall the echoes went great – Pete did have an enlarged heart from pumping too much blood which was a concern, but after the surgery, if he survived, Pete’s heart should return to normal. After the tech was done, Dr. Hornberger (Cardiologist) came into the room, she explained a few things, answered some of our questions and assured us that the doctors in Toronto were some of the best. Then we walked back to see the social worker who had booked the latest flight they dared get for us: midnight that night (TTTS can progress very quickly and there was no guarantee my babies would still be alive by the time we arrived in Toronto). I was not to eat anything from midnight on so that I would be ready in case they wanted to do the surgery the next day.

We were finally home by 4pm, had something to eat and thanked my sister Rebekah for babysitting 6 hours longer than I had expected! (She was also going to watch our kids during the days and nights while we were gone and my in-laws were going to watch them during the supper/evening hours so Rebekah could still work). We told our older kids that Dad and Mom wouldn’t be home in the morning, and hugged and kissed them good night. I wrote a few instructions down for Rebekah and for my Mother-in-law. Then we packed our bags, and by that time my in-laws were at our place ready to bring us to the airport. 

If you would like a copy of this story please let me know in a comment below, email me, or message me on facebook. 

Ian and Ryan's story - Introduction.

Most of you have read bits and pieces of Ian and Ryan's story as it happened, and some of you read the TTTS surgery story that I posted earlier this year. I have now finished writing out their story from when I found out i was pregnant till their first birthday. I am planning to post a few chapters a week since it is prematurity awareness month (November (day -17th)) and TTTS awareness month (December (day -7th))

If you are having twins please ask your Doctor if they are sharing a placenta. If they are, ask to be monitored (weekly/biweekly ultrasounds) for TTTS even if there are no warning signs. TTTS is not as rare as was originally thought and can progress quickly. Often if it is untreated one or both babies will die. 

1 in 10 babies are born prematurely. Having a baby in the NICU is a journey I cannot rightly explain though I try in my story.
This has been the hardest journey I've ever had, it has also been the most rewarding. I see so many things differently than I did 1 1/2 years ago. One thing I see differently is hospitals - they used to be intimidating to me, now I'm fairly comfortable going to them them. I've also become fairly desensitized on the outside (this is the best way I can explain it). That doesn't mean I don't feel the pain and heartache inside, I just have a hard time showing it on the outside, I likely won't cry, or even tear up. I've always been a little like this, but now I'm even more so. Now, I understand that a heartfelt hug, or pat on the back, or squeeze of the hand means more than any fancy words a person can think up. ❤

The story ends with two healthy, happy twins, not all stories end this way, many do not. All stories are different, just like  people. Not one is exactly the same.

We are and always have been a pro life family. We believe God is the giver of life. He doesn't make mistakes.
Many have asked if we had doctors or healthcare professionals that offered, or tried to pressure us into having an abortion. Yes we did. But we also had doctors that didn't even mention it, and they even called our babies what they are - babies, not fetus' or something sounding less human.  The first doctor in the Royal Alex I saw right after my second ultrasound - when they diagnosed TTTS, was not pro life as far as I could tell. He only mentioned the fourth option -fly to Toronto for surgery, under his breath and was visibly annoyed when I chose that option. He said there wasn't much luck they would both survive anyway. After we got back from Toronto I had to see him often when I went for weekly ultrasounds at the Alex, he would say things like "at least you have one healthy one", or "well one of your fetus' is doing well". He also often wanted me to come back in 2 or 3 weeks for my next ultrasound, instead of the recommended weekly ultrasounds the doctors in Toronto said was needed. So we often argued a little and then I got the Okay to come back in a week. After a while some of the ultrasound techs knew me and got the doctor to sign a blank 'next ultrasound' paper and then fill it in for the next week after the doctor had left. Then I wouldn't have to argue. Just before 32 weeks that doctor went on holidays and I saw another doctor, she asked me how come I wasn't admitted and having daily monitoring or steroid shots yet? I said because I hadn't been offered that yet. She gave me steroid shots within the hour and tried to get homecare to come daily to our house for monitoring, but they didn't have room in the program for me (lots of their funding had been recently cut). So she admitted me into the Royal Alex. She was quite worried. I didn't add all that to the story because I didn't want the story to sound like a 'sob story' or to bash any doctors, I don't know the reason why he seemed so rude to me, maybe his personal life was really bad, or maybe he had just had a lawsuit against him for something pro life. There are so many reasons, they are people after all. :-) 

We were able to stay fairly positive throughout this whole journey, and when we needed peace, or patience, or immediate medical attention, God gave what was needed right when we needed it. ❤
Dr. Ryan's team in Toronto was  the opposite, they are from what we could tell prolife and Dr. Ryan only offered abortion once, but from his facial expression he didn't like doing that at all. Later when we read reviews from people online, the only complaint we read was that he wouldn't do that persons abortions, he just send them to another doctor.

If you have any questions about TTTS or would like to donate to the ttts foundation here is a link to their website:

http://www.tttsfoundation.org/

I hope to do some fundraising for the TTTS Foundation in the future. (Still deciding how) They offer emotional and financial support to so many families that are effected by TTTS.

If you would like a copy of the story please leave a comment below, or message me on facebook.