My Daniel “Tiger” TTTS Survivor

My boys were fighters from their first ultrasound. It doesn’t surprise me at all to hear the nurses say Daniel is so strong, that he fights (often the NG tube which loses several time per day), and that he behaves like a much older baby. If we had only gotten to them sooner, I’m sure Joshua would be right there beside Daniel giving the nurses a double dose of Switzer grit.

The end of our NICU stay is finally within striking distance

At 47 days old and adjusted gestational age of 37w3d, Daniel has come a long way since his entry into our world at 30 weeks 5 days. He’s completed almost all of the NICU phases as he’s achieved developmental milestones, indicating he’s on the glidepath to coming home on or before his due date of June 20th.

Daniel is officially off all IVs and tubes, is learning to feed at breast and bottle, and is gaining weight like the champion he is. At 6 lbs 3 ounces, he’s well on his way to doubling his birthweight of 3lbs 8 ounces which bespeaks how good of an eater he is. Premature babies at 37-38 weeks old are not equal to a full-term 38 week old babies. Preemie development happens outside the womb more slowly and with maximum effort, while burning extra energy and calories keeping warm, breathing, etc. The earlier a baby is born, the longer he or she needs to develop key skills like feeding and breathing. Daniel is still having typical preemie events that indicate he needs more time to develop. For example, he has apnea events where his body just “forgets to breathe”, lowering his oxygen saturation which triggers alarms so his nurses (or mom if in his room) come and stimulate him to breathe. Preemies develop or grow out of these events once their respiratory and neurology matures.  Soon these premature issues will simply disappear. Until then, he remains under the watchful eyes and monitoring of the NICU.

We’re so Grateful for Your Kindness and Support

I cannot possibly convey our gratitude for the meals dropped off, sent to us in services and GrubHub gifts that have kept us, especially our 3 .5 year old Sam, fed as we navigate our grief along with Mark working full-time and me commuting 100 miles per day to put in a ‘workday’ of care for Daniel. We are so moved by thoughtfulness of friends and family who’ve sent care packages, cards, and love. Thank you for your unique support of us while we try to find our way in celebrating Daniel while honoring Joshua. 

Navigating the Awkwardness of Tragedy

A special ‘thank you’ to the people who are loving me right where I am, not asking me to move on, not saying inane crap to me, who have the courage to reach out despite the horror of what’s happened – people who have said, “I don’t know what to say but I’m here.” Thank you for not insisting I be someone I no longer am in order to keep your friendship. Some things in life are truly tragic and can never truly be fixed or even better, they can only be carried. Thank you to those of you who are trying to help carry, despite the awkwardness.

Thank you for the texts I sometimes forget to answer. Thank you for the small gifts, care packages that include a gift for Sam keeping his world bright, and meals that kept him fed those first agonizing weeks. Thank you for continuing to check-in and not expecting us to comfort you, not expecting us to soothe your discomfort of your exposure to our tragedy. Thank you for allowing us our grief without shutting us out, multiplying our pain. Thank you for the honest hugs and shared tears. Thank You.

• 

On April 16, 2021 our beautiful baby boy Joshua Matthew made his way into the world at 12:36 pm followed by his identical brother Daniel Joel at 12:37 pm. They arrived just under 31 weeks gestational age, perfect in every way and ready for their new lives with big brother Samuel who is 3 years old and mom and dad, Pamela and Mark Switzer.

Nothing prepares you for the joy and rush of emotions when you recognize your newborn child, seeing him for the first time in real life rather than on a black and white image.  Nothing prepared us for the sheer joy of seeing the two of them, with their sweet faces identical as well as their hands and feet and tiny gestures – all so reminiscent of their big brother Sam’s.

Joshua and Daniel spent their entire gestation snuggled or spooned, always close to each other, no matter the room they had to stretch out. Daniel had the most room to move about but was always as close as possible to his brother, ever the protective big brother from the very first ultrasound. They were so energetic and active that they were almost impossible to monitor while mom was in hospital antepartum. They were fighters from the first moment of life, pushing back against Twin to Twin Transfusion Syndrome (TTTS) and Selective Intrauterine Growth Restriction (sIUGR) to successfully make it well beyond viable gestational age. Life with their family seemed sure to their doctors. Together, we had won getting them to healthy viability.

Then, the acute TTTS event that went from Stage 0 to acute Stage 5, happened sometime in the early morning of April 16th and required they be delivered asap. Although they were delivered via emergency caesarean and were stable after birth, at 24 hours old Joshua’s condition became critical without warning. He fought bravely against the toll the TTTS reversed-umbilical flow event took on his body the prior day, until mommy and daddy told him it was alright to rest, that we loved him so, and would see him again one day as we sang him to sleep for the first and only time. We unwillingly surrendered him to his heavenly caregivers, far too early – his life but a promise of firsts: first smile, first laugh, first kisses, first hugs, every first sweet moment in which we will witness and honor Joshua through his perfect mirror image in Daniel. Mark and I will forever be parents of twins, loving all three of our boys with hearts not quite whole.

We simply could not love you more, Joshua. 

In Remembrance of Joshua

We’ve chosen not to hold a public service for Joshua. In lieu of flowers, we’d be honored if donations were made in Joshua’s memory to the Twin to Twin Transfusion Foundation (https://tttsfoundation.org) which began as a mother’s promise to her twins Matthew and Steven, two baby boys who started the fight against TTTS. Mark and I are grateful to have met both of our twins in-person, yet so many parents do not have that opportunity. Every day, Mary, the TTTS Foundation’s amazing staff and network of volunteers help mommas like me, at the point of their need – in their everyday moments, crying in their cars after diagnosis, boarding airplanes to get to one of only eight or so specialist fetal surgeons in the country, waiting in hotel rooms and the purgatory of the “in betweens” of ultrasounds, in the consuming darkness of this diagnosis. Mary first called me after my first ultrasound confirmation of TTTS and listened, comforted, and supported me while I cried in my car for two hours, terrified of the unknowns. She has been a lighthouse in this storm for me, able to understand my fears and now my loss as only another mom of daisy babies can. Please join us in our fight against TTTS, the thief who conspires to steal our babies and our dreams.

Today is our 32 week gestational age target. It’s bittersweet to arrive on this day without Joshua; he, Daniel, and I spent every moment together for so long. I miss him with every breath I take.

Our fetal surgeon said Joshua should be alive. He was mature enough, big enough/weighed enough, his heart defects weren’t an issue after he was born – we had won. We had made it to healthy viability. Our boys were strong and ready for life on the outside of the womb. But tragically, the TTTS event that happened with no warning had reversed the umbilical flows and bombarded Joshua’s body without mercy. Being the smaller twin, he sustained more damage than Daniel but to be clear, we were only a small window of time from losing them both. Joshua rallied after birth and appeared stable, but within 24 hours the damage was revealed. The knowledge that if we’d delivered them one day earlier, Joshua would be here with us right beside his beautiful brother, is heartbreak upon heartbreak for me. The reality that we acted on my intuition of something wrong and were able to save Daniel does little to soothe my fractured soul or fill the enormous void in our lives where Joshua belongs. We are without a doubt eternally grateful to have a chance to love Daniel, kiss his owiees, hear his laughter, and see him grow. Little Daniel who kept his brother alive during the entire pregnancy is the tiny hero of this story. We are blessed to have had the opportunity to meet Joshua however briefly, hold him, kiss him, and tell him how much we love him. We’ll forever see his sweet face every time we look into Daniel’s eyes; his identical twin, perfect mirror images of each other.

Joshua Matthew Switzer 04/16/2021 -04/17/2021

At 12:47 pm today, I held Joshua while he took his final, weak breath. Mark and I are relearning how to breathe. Our hearts are broken and our lives forever changed.

Welcome to our world, Daniel and Joshua!

The twins were born via emergency csection today!

I’m doing well, babies are stable. Joshua Matthew was born at 12:36 PM weighing 3 pounds and Daniel Joel was born at 12:37 PM weighing 3 lbs. 8 oz.

Joshua had gone into fetal distress with acute TTTS and had to be delivered immediately after the ultrasound today; They couldn’t even wait for Mark to get to the hospital. Joshua is on aortic watch and they’re carefully observing him, already he’s showing signs of improvement but having done trouble with his breathing. We’ll find out in the coming days id his heart will function outside the womb and if he needs open heart surgery via transfer to Seattle Children’s. Daniel is doing very well. The neonatologists say preemies tend to be released on their due date (6/20/21) or if they do really well, sometimes earlier. They absolutely cannot be released until they’re at least 4 pounds because car seats are not rated under 4 pounds. They also have certain skills they must master, milestones to complete, before they can be released. For example, their breathing has to be on assisted with no apnea events for a certain amount of time. Then they have to learn to suck swallow and breathe in order to feed properly. So they have a bit of a journey ahead of them.

We’re under no delusion that will be fast for either of them. If Joshua has to be transferred to Seattle children’s that will extend his stay in the nick you but it will likely be at the other hospital. Daniel will probably go home much earlier than his due date; we think maybe 6 to 8 weeks for Daniel and probably longer for Joshua. But it just all depends on how they improve and how they’re doing. I wIll update with more as details are available.

The unbelievable, miracle of how Josh even survived!

After delivery, our fetal surgeons examined the placenta. They found a stunning fact. Instead of the previously estimated placental share which wqs that Daniel was receiving approximately 80 to 85% of the placental share and Joshua receiving approximately 15 to 20%, Joshua had actually received 0%! You’re reading that correctly: Joshua had no access to the placenta at all- none, denada, zilch!!! His umbilical cord was connected to an artery that ran to Joshua’s umbilical cord from Daniel’s – the “inflow” of blood and nutrients. Then from Josh’s umbilical vein or “outflow” went back to Daniel’s umbilical cord, forming a loop. Daniel has been keeping Joshua alive since week 12 when their egg sacks were depleted and it becomes the placenta’s job to take over to sustaining them! Daniel kept Josh aliv for 17+ weeks, which explains Daniel’s fall from the 98th percentile to approx 70th!!! Just amazing. My doctor thinks a clot must have occluded the cord today, causing a full reverse flow to Joshua- causing fluid in his body cavity which put him jnto dangerous velocity of blood in his brain and headed for heart failure. Because I didn’t feel quite right, the dic ordered ultrasounds which normally wouldn’t have been done till Monday. We would’ve likely lost both twins within 12 hours – by 4pm today if we hadn’t had a reason to get those ultrasounds. Just miracle on top of miracle on top of miracle.

Thank you, thank you, thank you all!

Again, I am compelled to repeat how much we’ve appreciated your positive energy, support and prayers. Thank you isn’t enough but just know I couldn’t be more grateful.

💙💙🍼🍼👣👣

Pamela

#boymom

We’re only 10 days away from our 32 week goal of 4/25! I’m now equal in gestational size to a woman at 38 weeks carrying a single baby. My body is tired and the wheels are beginning to come off – but we are so close!

This week our big baby’s growth puts him at 3lbs 8 oz and our small baby is at 2lbs 6 oz. Both have fluid pockets of approx. 7 cm which is in the normal range. Dopplers are still elevated but stable. It’s hard to believe at these weights, their tiny little bodies have passed the threshold for survival outside the womb!

Also at this time, three things are becoming quite clear:

#1 with each passing day, the threshold for what could drive delivery gets lower, and I am evaluated daily to weigh if the twins better out than in.

#2 this will be a dramatic, emergency csection- it will be some issue that pops up and the doctors say, “okay, it’s time; we’re taking you to the OR”. I’ve already had a couple of ‘prepped for the OR’ scares that got canceled at the last minute which I consider practice. So, I’m just being grateful for each additional day that they stay in.

#3 hospitals are generally not restful places. Antepartum in hospitals are a kind of low-grade CIA torture. For example, I’ve been trying to write these few paragraphs now for an hour, because I’ve been interrupted 8 times by someone coming into my room, be that a nurse who just gave me meds 15 minutes before but now has decided to come back and take vitals, or nutrition stopping by to inquire why I’m not loving their “homemade soups”, to housekeeping, the sharps container collection guy, etc. I have to stop what I’m doing, put on my mask, and pay attention (nurses don’t take kindly to anyone staying on the phone or looking at their phone; they posses a teacher voice that takes me back to 2nd grade). There’s only one time per day that I have no meds or checks between midnight to 6 am and should be able sleep for that 6 hours, in theory. But, if my monitoring runs long like the night before last until 4 am, I get 2 uninterrupted hours of sleep. If I don’t get up every 3 hours and empty my bladder, contractions begin. So, I’ve begun my slow descent into post-partum zombiehood. Who really needs cognitive function anyway? 🤣

When I deliver, likely sooner rather than later, the silver linings are not only getting to see my babies’ faces and be back home with my husband and 3 year old, but to once again take a full breath, sit upright at a table or on a sofa instead of having to remain horizontal, see and reach my feet, get my balance back, shower without being terrified of a fall/injury, no longer have the headaches, swelling and eye pressure, or a myriad of other inconveniences that culminate into somewhat miserable days and nights. I’m finally ready to be done, but it’s my job to bake them for as long as I can. But I will celebrate when I get to live alone in my body again.

Thanks everyone for your support! We’re almost there!

💙💙👣👣🍼🍼

Dramatic shifts followed by stability

Firstly, another milestone in the books: we’re at 28 weeks today! At times, we doubted we’d ever make it this far. Now, our doctor is telling me to target 34 weeks (that magic number) on May 8th. At 30 weeks, the babies achieve more development and organ health. At 32 weeks, they achieve the same plus more body fat needed to survive the initial weight drop and the stress coming of life outside the womb. But at 34 weeks, the babies’ development is basically complete, and they just continue to gain weight in utero from there. This makes 34 weeks the ideal time for them to be born. Dare we hope we can get them there? Will my body and theirs hold out? My doctor is more confident than ever. So, we’re praying my preeclampsia stays controlled and the babies continue to be stable.

Of course that’s all easier said than done. Just 24-36 hours ago, a team of nurses burst into my room, and rolled me onto my side. Some did an ultrasound while others put in an IV line and began prepping me for an emergency c-section. Why? All babies at this gestational age commonly have what’s termed deceleration events. These are caused by the babies rolling onto, clamping under their arms, or yanking/squeezing their umbilical cords such that they cut off blood flow, effectively occluding their own umbilical cord accidentally. Prior to this age, my twins were neither strong enough nor had enough body mass to do this. Usually the dip in heartrate resolves all on its own in 1.5 minutes or less rather immediately. Yet, this week, one of my babies had a deceleration event where his heartrate dropped beneath that which can sustain life for more than 4 minutes, and was prolonged: it didn’t appear as though it was going to come back up on its own. Note: at approximately 10 minutes into a deceleration event that hasn’t resolved, they must do an emergency c-section. The rolling me onto my side got that baby’s rate to come back up to normal, then the other baby had a similar event less than an hour later. I was put on 24 hr monitoring and was awakened overnight every time there was an event greater than a minute. Needless to say, it was a harrowing 24 hours. Since then, the babies’ monitoring hasn’t picked up more or worsening deceleration events so were again stable. But my IV is still in and that constant lump in my chest remains, where it will for 4-6 more weeks. It’s so clear that nothing is very predictable at all. Therefore, the plan is to manage whatever pops up when it pops up. My doctor said, “the way to manage [this type of pregnancy] is to solve each problem as it arises. Then, keep solving problems until the only solution is delivery.” We’re trusting his incredible experience and expertise. But that doesn’t mean we aren’t battle fatigued and worried dor our twins lives. I admit I may have watched The Martian starring Matt Damon several times recently for encouragement to keep a calm head and focus on solving problems until there are no more to solve. It’s a great movie. Plus, in the movie, Matt’s character figures out he becomes a pirate in the process. 😊

As always, thank you for all the prayers and positive energy as well as the puzzle books, reading material, texts, jokes, memes, binge watching recommendations, and kindness sent our way to help support our mental health. We know we are not alone.

With Gratitude,

Pamela

• 

Another good report on the twins!

Today, ultrasound and Dopplers showed they’re stable and growing. Baby B has grown well in the last two weeks: he’s now overall in the 68th percentile weighing approximately 3 lbs. Baby A our little guy is still hanging in there with positive growth but at the 3-5th percentile weighing approximately 1 lb 13 ounces. Ideally, these buns stay in the oven and just keep on growing!!! Next goal, 28 weeks.

Momma’s getting more support

Due to more frequent monitoring of the twins and my health declining a bit, I was hospitalized overnight. I’ll remain hospitalized until the twins are delivered. It’s something we anticipated and is more support for the three of us. I won’t lie; it was hard to leave in the middle of the night knowing I probably had my last good night hug from my sweet Sam for maybe a month or more, and would only see my family over FaceTime for just a few minutes a day. I’ll miss everything every moment: my husband, my son, my dogs… And it’s obvious going to be hard for them. But we know it’s temporary. We’ll get through it.

Eternally grateful for the prayers and support of our family and friends. Friends are the family we choose; thank you for sending the love. ❤️

Another stable week for the twins!

This week marks the second week of stable numbers from the twins! They’re growing and getting stronger everyday which is just what the doctor ordered during these critical 23-26 weeks! One more week and they’ll fully developed enough to be viable outside the womb. I feel their kicks – from both babies even the little one – regularly and am beginning to believe we could actually all make it. One more week, then it’s all organ maturity and adding body fat. Our doc is confident now about reaching 28-30 weeks! That’s just more music to my ears!

Our next peek at their growth comes Wednesday March 10th because they only measure for growth every 2 weeks. Here’s hoping they both continue to grow and trend upward.

While the babies are beginning to stabilize, week 27 will begin my 3rd trimester which includes tough conditions specific to momma. I went to the doctor 3 days during this week: I had 2 more IV iron infusions because I am severely anemic from the internal bleeding, my blood pressure is trending upward, and I nearly had cerclage. Yet again, my amniotic fluid reduced on it’s own from 4-5x normal down to a little over 3x, pushing out what is likely to be inevitable- most twin pregnancies require cerclage due to the extra weight and oppressive gravity. The long drives, on an empty stomach, and procedures are beginning to take their toll. I took a big nap when I got home each day- totally wiped out. While I am healing, my hematoma shrank a little, it may take weeks/months to completely heal. Also, my contractions are under control with meds. With all of the twin related extra risks to momma – gestational diabetes, preeclampsia – along with contractions/preterm labor caused by extra amniotic fluid and a uterus trying to cope with the sheer volume, my doctor is saying I’ll be on hospitalized bedrest by 27-28 weeks until the twins are delivered to better manage my health to keep them in longer. This is honestly still music to our ears because those weeks after 28 put the much needed weight on the babies and mature their organs and nervous systems – keeping them in is truly priceless. I’m finally hopeful again after such a worrisome time.

Thank you so much for all of your prayers, support, kind words and positivity. I really appreciate how many of you have reached out. Your kindness means the world to me.

Last week was nightmarish. Mark rushed me to the hospital on Monday at 12:30 pm in extreme pain. We were sure this was it- we were losing the twins. But no, again we escaped the worst!
It all started with my terrible pregnancy rhinitis which caused a hacking cough that began on Friday 2/19 and steadily worsened. At some point over the weekend, I coughed and felt a pop in my right abdomen and a burning pain, followed by the forming of a hard, painful lump about the size of a silver dollar. Monday morning, I’d called my doctor’s office and although they thought it sounded like a pulled muscle or ligament, they asked me to come in to check it out. Just trying to change clothes to get ready to leave for the appointment made the pain worse to the point that I was sobbing. I could barely walk to the car supported almost entirely by Mark. Halfway to my MFMs office in Evergreen Hospital, I called and said I was going directly to the ER due to the pain increase; they agreed to meet me there. By the time we made it to OB Triage, my contractions were steady and the pain was off the charts: I couldn’t stop screaming.

The doctors diagnosed that my cough caused the artery supplying blood to the abdominus rectis muscle (upper right abdomen) had torn and I was bleeding internally causing a hematoma to form between my muscle layers and my uterus, measuring 4 inches wide and stretching 16 inches down my entire right abdomen. Unfortunately, they couldn’t operate to relieve the pressure because that would allow for even more bleeding; the recommended course was treat the pain and allow the bleeding to stop on its own. The pressure from the expanding hematoma and internal bleeding was pressing on my uterus, causing contractions threatening preterm labor. By 7pm, I was admitted, in my room, getting IV drugs to stop labor and manage pain, which caused me to vomit anything that went into my stomach (predominately ice chips). They took vitals every hour and by 6 am got the vomiting under control. After 3 days of internal bleeding, it stopped but left me dangerously anemic. My options were a full blood transfusion or IV Iron infusions every 3 days until I’m no longer anemic. I had my iron infusion on Friday and they released me.

I’m now home on bedrest, extremely fatigued and still in a lot of pain. My abdomen looks like I was in a car accident; bruised and the blood from the internal bleeding gathered under the skin purple, red, green and yellow. My doctor says it’s going to take about 90 days to recover. He could only find 11 people internationally who’ve ever experienced this since records began medically. The root cause: anticoagulant. Yes, the aspirin therapy (81 mg low dose aspirin daily to prevent preeclampsia) made me prone to bleeding. Carrying twins plus enough amniotic fluid for 4 babies stretched everything to prime for a problem. The coughing caused the tear. All in all, I’m really lucky to be alive: I believe all those prayers and positive healing vibes paid off. Luck just cannot possibly cover this.

The biggest news: the babies are doing fine throughout this injury! It’s mystifying yet an incredible blessing that they’re okay. Their fluids are increased somewhat but their growth was great, so onward we press toward those magic dates where they can be healthy outside the womb. We’ll get another peek at them by Tues Mar 02. 💙💙🍼🍼👣👣