William, Charlie, Ikey, Benny, Henry

William, Charlie, Ikey, Benny, Henry

Monday, March 4, 2013

March 8th

Betsy said, "All I remember is running into the hospital lobby and seeing Jason. Distraught, still wearing OR scrubs, and holding up his arm from across the room to show me three wristbands."

My memory of March 8th starts at the real beginning, which was 11:30 p.m. the night before. By the time Betsy's scene unfolded in the hospital lobby, I had made several trips through hell and was now lying in an OR recovery room. Ironically titled, since I'm not sure some people ever fully recover from certain experiences.

We were told, immediately, that I'd have a risky pregnancy. The good news? Our babies had their own amniotic sacks. The bad news? They shared a placenta. Luckily, only 10-15% of identical twins (or triplets, in our case) develop twin-to-twin transfusion syndrome (TTTS) due to a shared placenta. Unluckily, the odds didn't play out in our favor.

By week 16, our perinatologist's suspicions were confirmed, and we were off to Cincinnati for potential fetal surgery (only a handful of hospitals in the United States offer this high risk treatment.) With TTTS, shared blood vessels in a common placenta cause one baby to "steal" from the other. The dynamic isn't quite as clear cut with triplets, but it's the same general principle. So, for 8 weeks we drove 9 hours to Cincinnati, every 5 days...the Cincinnati Children's Hospital and the Covington Holiday Inn being our home away from home. Each time I'd have a full day's worth of ultrasounds, MRIs, and fetal echocardiograms, and end with a final consultation discussing whether I'd have surgery or go home.

Complicating matters was the very unpromising discovery that Baby A was severely growth restricted. Proceeding with surgery (and severing the shared vessels), would most likely end Baby A's life, but protect Baby B and C. Leaving the vessels intact would give Baby A a chance to continue growing, but keep Babies B and C in distress. Furthermore, should Baby A "expire"on his own (their words, not mine), the sudden drop in blood pressure would produce devastating effects on the other two, ranging from a severe intrauterine stroke to death. Because of this very possible scenario, we were offered the worst option. Voluntarily tie-off Baby A's cord to completely protect B and C from the effects of his (potentially inevitable) passing. Try to wrap your mind around that. We absolutely couldn't.

I was on strict bed rest during this time and was determined to do ANYTHING possible to aid Baby A's growth, thereby prolonging an impossible decision. I read some research that suggested increased protein for TTTS and growth restriction, so I ate and ate and ate. My dad lived with us during my bed rest and spent the day making me spinach omelets, bringing me greek yogurts and Ensure shakes (no less than 3 per day, to be precise)...basically feeding me as much protein as I could cram down between trips to Cincinnati.

At 24 weeks the proposed fetal surgery was deemed too risky for both me and the babies, and furthermore, past this marker, tying-off an umbilical cord is no longer an ethical consideration (for those in medicine). With those options off the table, we were discharged from Cincinnati. In some ways, having those decisions taken away lessened the mental anguish, but we were MILES from safety (with less choices) and in NO way relieved.

Despite some teeter-tottering, we'd essentially coasted through those eight weeks. However, with no interventions left in play, any further emergencies would result in delivery. We wondered how long we could coast like this....turns out, the answer was two days.

She didn't have to say a word. I'd seen a very simple sketch of "bad, worse, worst" in the beginning of my pregnancy, and with dozens of ultrasounds under my belt since then, I knew exactly what I was looking at...reverse diastolic flow in the baby's umbilical cord. A very, very ominous finding.

Tears streamed down my face as the doctor delivered our worst news yet. In the 48 hours since my last ultrasound, Baby A had taken a very serious turn and was actively failing, evidenced by several measures on the ultrasound. Delivering the babies (at 24 weeks, 2 days) would give them a chance at a live birth, but realistically, that's it. Baby A would likely pass in as little as 24 hours, and because all three still shared blood vessels through the placenta, there was no way to predict the impact on Baby B and C. Despite the temptation to pull our babies out, his recommendation was to stay the course...and let him go.

People often ask what it was like feeling three babies move on the inside. The funny thing is, I always knew who was who. Because Baby A was my most active in utero, I was almost always aware of him. Now, I became literally nauseous every time I felt his movements...wondering if it would be the last. Nights were unbearable. I was scared to go to sleep, fearing that when I woke, his side of my belly would be still. We did a lot of praying. I've always heard that when something feels too big to handle, turn it over to God, so that's what I did. I begged every minute of the day to please, just be there. Jason and I were grief-stricken and second-guessed our every thought and decision. Times when Jason thought I was asleep, I'd hear him sobbing in the living room.

Surprisingly, hours turned into days. And the days eventually added up to a week. I'd wake each morning and immediately feel Baby A. I'd call Jason at work to reassure him, and then we'd usually have an ultrasound to confirm what was happening. Our doctors were puzzled. None of this made sense, but the bottom line was that our baby was still there...and fighting! Some of his ultrasound measures actually improved and we put our heads together to develop a new plan.

Our doctor consulted with a colleague in Texas who suggested we shouldn't deliver before 28 weeks, but we were willing to back that line up just a little. I couldn't go into the hospital until we were ready to deliver because although I'd had unofficial tests all along, an official test (in the hospital) would prompt an ethical obligation for doctors to act on the results. Because everyone feared what the "real" tests would reveal, we had to put off admission until I was comfortable delivering, just in case. Still, we were looking ahead and preparing for the possibility of babies, and when I asked our doctor where he'd send me if I was his daughter, he answered without hesitation...Evanston.

So, at 26 weeks I had steroids and packed my bags for admission later that week. Baby A had been fighting for 18 long days since that fateful ultrasound and finally, at 26 weeks and 6 days, I checked into Evanston Hospital.

Leaving for the hospital at 26w6d. I have no idea what's about to take place in 24 hours.

Leaving home, particularly under these circumstances, was as unpleasant as you can imagine. I was going somewhere completely unfamiliar, for who knows how long, and leaving behind my husband and 22-month "baby." And, I knew that when I did return, things would be drastically different...no matter what the outcome. I was a wreck.

Checking in wasn't too bad. I had a bunch of tests with their high risk doctors that turned out better than anticipated (for once) and got settled into my room. Jason stayed until 10:00 p.m. and then I talked on the phone with a girlfriend before turning off my light for my first night in the hospital. The baby had to be monitored every shift, so it wasn't long before the night shift nurse came in and hooked me up. Instantly, there was a problem...Baby A's heart was experiencing frequent and prolonged decelerations.

Doctors ordered monitoring to continue for an hour, which took us past midnight. With no improvements, the doctor asked I be taken to labor and delivery. What? No. No, no, no, no, no, no, no! I tried to tell them he was just playing tricks...he does this kind of stuff all the time and is always okay in the end....you just don't know him yet....is this absolutely necessary?....I'm not ready...today is not the day. Actually, it was.

Labor and Delivery nurses monitored all three babies constantly until after 3:00 a.m. with no improvements. They told me it was time to call my husband. By the time Jason arrived I was about to get a large dose of magnesium sulphate in an effort to protect the babies from cerebral palsy and brain bleeds. Tortuous...I now know what it feels like to burn in hell...but completely worth it.

By 7:00 a.m., things had calmed down a little with Baby A and the doctors were having a meeting to discuss our case. Baby A was more stable than he'd been all night, so Jason left to quickly wrap up some loose ends at work and I needed some sleep. Change of plans...the doctor came in and said, "I'm sorry Emily, but we're not going to get any more time out of this pregnancy....we need to get the babies out now." You'd think I'd be mentally prepared, but I wasn't. I left a voice message for Jason to get back to the hospital (I was being taken into surgery in minutes!) and the only nurse in the room held me like a baby and asked if she should call the pastor. I adamantly refused her offer, and in hindsight, can't figure out why. I think having the pastor there signaled that something really bad was about to happen...and I just couldn't give in to that notion.

There was a lot of rushing. Jason rushed in. I was rushed to the OR. And about 30 people (it's a teaching hospital on top of needing a small army to care for each of the three babies) filled the space. One of my last thoughts was that I was pregnant with 3 boys. Real, live boys...and I didn't know whether the same would be true in a matter of minutes.

It wasn't pretty. The first baby cried as he came out, but it didn't sound like a baby. Jason and I caught a glimpse of him as he was hurried to life support and it was extremely upsetting. Shocked by his size, I thought to myself, "please don't be the big one." Emotionally done in, Jason started to faint and was taken from the room. Good thing, too...the delivery didn't get any nicer from that point on. They called "code blue" on me, and it was several bags of blood before things were back under control.

When it was all over, I laid with my empty belly feeling certain they accidentally took my heart and soul during surgery as well.

The rest of this story is already documented. A wonderful man, Dr. Caplan, visited me immediately to say all three were stable, and from there, our heros in Evanston saved all our lives.

The weeks ticked by, for 115 days, and as you know, this story has a happy ending. I've never shared pictures from the hospital. I could share the stories, but wasn't emotionally ready for people to actually see our boys. It was one aspect that I was extremely protective of during our experience. However, being safely on the other side, I'm happy to share a glimpse of what's in our rearview mirror...

JOY...holding my baby Benny....FINALLY...7 days after his birth.


It's hard to see exactly how small they were. In this picture, Benny's whole hand is approximately the size of my ring. At 7 days old, Benny weighs 840 grams in this picture...which equals 1 pound, 13 ounces.

Our big boy, Charlie. He's wearing clothes for the first time in this picture, and is 4 days shy of one month old. On this day he weighed 1230 grams, or 2 lbs 11 ounces.

Charlie and Daddy...one month old! Hooray! His weight today is 1313 grams = 2 lbs 14 oz.

Ikey is almost 2 months old. On this particular day he weighed 2 lbs. 14 oz. (Three grams less than Charlie weighed at one month)
And our Ikey at 3 months. On this day he weighed 1915 grams, or 4 lbs 3 oz. And, this was his last day in an isolette. Later this evening he was moved to an open-air crib.
Day 55. 60 to go.
So, why tell this story now? Well, lots of reasons. Later this week we'll be celebrating a very happy second birthday, but the day doesn't come without remembering where we came from. Until now it's felt too fresh to recount online, but I think it's time to share, get things off my chest, and begin healing. It's also come to my attention that there are people in the same boat, scouring the internet for any story of hope to offer some optimism within dismal circumstances. I was one of those people during bed rest and can finally say that we made it. Whew. So, a joyful post to follow...one that will celebrate our two-year-old miracles and all the HAPPINESS they've brought us, but for now, there was only one way to illustrate just how far they've come.

I will never let March 8th pass without thanking God for the special people along our way, so to end this post, I think it's only appropriate to list these names. May you always know how thankful we are for you.


Dr. Karande--RE, Hoffman Estates, gave us hope and beautiful beginnings

Dr. Klipstein--RE, Hoffman Estates

Dr. Aguiar--OB, DuKane Obstetrics, St. Charles

Dr. Kalchbrenner--Perinatologist, Delnor Hospital, Geneva

Dr. Losure--Perinatologist, Delnor Hospital, Geneva

Ginny Munch--Nurse Practioner, Radiologist, Delnor Hospital, Geneva

Dr. Lim--Pediatric/Fetal Surgeon, Cincinnati Children's Hospital

Dr. Polzin--Maternal/Fetal Medicine, Cincinnati Children's Hospital

Dr. MacGregor--Maternal/Fetal Medicine, Evanston Hospital

Dr. Horton--Maternal/Fetal Medicine, Evanston, delivered triplets

Dr. Caplan--1st Neonatologist, welcomed Charlie at delivery, 
Evanston

Dr. Horcher--Neonatologist, welcomed Isaac at delivery, Evanston

Dr. Derrick--Neonatologist, welcomed Benjamin at delivery, Evanston

Dr. Frost--2nd Neonatologist, Evanston

Dr. Amer--3rd Neonatologist, Evanston  **Under Dr. Amer's care the longest, three 3-week rotations

Dr. Allgaier--4th Neonatologist, Evanston, our first "west coast" doc

Dr. MacKendrick--5th Neonatologist, Evanston, two rotations, discharge doc

Janet Winslow--Social Worker and emotional lifesaver!, Evanston

Hilde Hutchins--Physical Therapist, Evanston

Dr. Rabiah--Pediatric Ophthalmologist, Evanston

Dr. Sheth--Ophthalmologist/Retinal Specialist, Evanston, performed Isaac's eye surgery

Dr. Mak--Pediatric Surgeon, Evanston, performed Isaac's PDA ligation

And last, but not least, our primary nursing team:
Tracy Teschner
Mary Cunningham
Carolyn Whiteley
Pam Franzen
Jessica Ko
Lyn Hallberg
Christine Siciliano
Jayleen Cadle
Kathy Panov
Catie Barrett



2 comments:

  1. Wow, thank you for sharing that story. I am sure it's hard to remember that time period. I realized after seeing pictures of Betsy here that she was my post-partum nurse at SMH when my twins were born early last fall. She was awesome, but you already knew that :) I love reading about your family and the house renovations too!

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  2. I just stumbled upon your blog, and read this post, crying many times as I read. I was searching on the Internet for "sip and see" ideas, as I'm having a shower for a friend who just adopted a baby boy. Your blog came up, from a previous post, and caught my eye, because I also have triplets. Three little girls (fraternal)... they'll be 4 in May. I had a practically flawless pregnancy, but i was aware of the potential problems that could happen, and my mind went to where you had to actually go, many times. Thank you for sharing this experience, and for making me that much more thankful for my good circumstance. I'm so thankful to you for sharing, and congratulations on your lovely family!

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