#2 - The Journey with Twins: The Second Trimester Up to the Surgery
*Originally posted on November 8, 2016 - Dates changed so the Journey with Twins posts could all be found in one spot together.
At the close of my first trimester, we went to visit my parents in Logan before my Dad underwent his last round of chemotherapy for his Leukemia. I was still awfully sick and I was racked with anxiety for the babies as both my mom and oldest sister, Amy, had miscarried twins right around the end of their first trimesters. In an effort to obtain peace, I had Burke and my Dad give me a priesthood blessing.Burke, speaking on behalf of our Heavenly Father, laid his gentle hands on my head and blessed me that I would feel at peace. He blessed me to know that we were being watched over by family on both sides of the veil. And then he uttered the words that I will never forget. He assured me that this pregnancy would be "a bumpy road full of mental turmoil and anguish with many difficult decisions to be made." Here he paused as though waiting for inspiration to come, sorting out his feelings from the words the Lord wanted him to say. "Emily, in the end, these babies will come whole and healthy." The blessing went on, but all I can remember is repeating in my mind, "whole and healthy, whole and healthy". I breathed a sigh of relief. I could handle a bumpy road. I could handle mental turmoil and anguish as long as the babies came whole and healthy.
14 Week 3D shot of Baby A during gender ultrasound confirming our intuition - identical boys!
A few weeks after returning home from Logan, my intense nausea mercifully eased and we were able to learn the gender of our babies at just 14 weeks gestation. I was amazed as most singleton pregnancies don't get to check for gender until the halfway 20 week mark. Twin perk! On April 28, Dr. Sanders examined Baby A and confirmed what we already knew, "Guys, looks like we're looking at a little man cub!" Since he suspected our babies were identical (Mono-Di: one placenta, two separate sacs), we inferred that they were both boys. Upon closer inspection of Baby B it was undeniable that two little men were coming to our family. We were ecstatic!
On a side note, this appointment came just one week after we listed our home and sold it in just 4 days. The next 6 weeks were spent packing, drawing up house plans with a designer and checking in on the boys with ultrasounds every 2 weeks. There seemed no cause for concern, although Dr. Sanders did mention more than once that our Baby A seemed to be measuring slightly smaller than brother. As a standard precaution for multiples, at 16 weeks we scheduled an appointment with the Maternal Fetal Medicine office located an hour away in St. George. They usually like to see high risk pregnancies at the 20 week mark, but their first available appointment was at our 21 week mark. Dr. Sanders felt it wasn't necessary to continue our every 2 week appointments until after our MFM evaluation, so for 5 weeks we didn't see our sons.
On June 8, we moved from Enoch to Parowan to live with Burke's parents for a few weeks before the house we would be renting became available. We were in the process of getting bids to build our new home and were hopeful that we could start building and be in the new house by Christmas (which Burke told me was completely unrealistic!). Things seemed to be progressing smoothly with both our housing plans and the pregnancy, yet I distinctly remember that I hit the 20 week mark in Parowan and it seemed that overnight I felt an increased weight settling down on me both physically and emotionally. I felt huge and there was an awful pressure on my spine that made my back ache around the clock. Knowing I still had months of pregnancy to endure was difficult as I could no longer take walks without pain or enjoy the beautiful summer months playing with my girls the way I would have liked.
I was anxious for advice on how to relieve my aches and pains when we traveled to St. George for our first Maternal Fetal Medicine apt on June 15 and had our initial consultation with Dr. Michael Esplin who had flown in for a three day shift from Salt Lake City. Dr. Esplin was very likable and had fantastic bedside manner.
When he came in he congratulated us saying, "Twins! Two for the price of..."
"One!" We filled in the blank of the over-used expression we had heard dozens of times in the past few months.
"No!" Dr. Esplin emphatically responded, "Two for the price of two! With twins you get twice as sick, run double the amount of risks, shoulder twice the expense and upon arrival you will be doubly sleep deprived. You definitely pay for those babies in blood, sweat and tears and don't let anyone downplay the enormous task you are faced with."
I can't tell you how gratifying it was to hear him say that! I had been trying all along to be a good sport, but the reality was that neither of the girls' pregnancies had even come close to this physical exhaustion and intensity. It was validating to realize that I wasn't just weak, but that this pregnancy was truly beyond anything I had experienced.
Dr. Esplin went on to explain the variety of risks that come with multiples and what our ultrasound tech would be measuring and looking for that day. Enter Brett: chillest ultrasound tech ever. We would come to know him fairly well over the next several months as each appointment to MFM lasted at least 2 hours and sometimes much longer. As we were always in a rush to get to St. George, drop the girls off at Cassie's house and get to the hospital, I always seemed to forget to pack enough food to sustain my voracious appetite and Brett was such a champ to supply me with Lorna Doone cookies and saltines to ease my discomfort! :)
Brett's ultrasound pics of the boys from our first MFM visit on June 15.
After about an hour of examining the twins, Brett had measured everything from their head circumference to their blood flow levels. He mentioned right before he left the room that our Baby A was measuring much smaller than our Baby B, awakening a latent concern within Burke and I that all was not right. When Dr. Esplin came back in to break down the results of the ultrasound, he had gone from jovial to serious. He explained that the growth discrepancy between the boys was quite alarming. Generally they don't like to see more than a 20% difference between twins and our little guys were sitting at 40% gap. Dr. Esplin then went on to introduce us to Twin Twin Transfusion Syndrome (or TTTS) which we would become painfully familiar with in the coming weeks.
When you become pregnant with identical twins, they share one placenta and in the first few days from conception, they grow blood vessel into the placenta, some of which connect with the other twin's blood vessels. The twins are then enabled to share blood back and forth, continuously pumping and circulating from one to the other. For most identicals, this is normal and does not become an issue. However, in some cases, a serious problem occurs when one baby acts as the donor (giving blood away) and the other baby acts as the recipient (retaining the blood). Logically, you would assume this would be most dangerous for the donor baby as their blood levels drop and are not enough to sustain their growth and proper organ development. However, the recipient baby ends up being highly at risk also as the extra flood of blood forces their heart to pump rapidly resulting in heart failure.
Dr. Esplin explained that a large disparity in twin growth is one indicator of TTTS. Another thing they look for is a shrinking bladder on the donor resulting in increasingly less amniotic fluid around the donor (think of the fetal sac starting to shrink wrap itself around the baby) while the recipient baby has an enlarged bladder with excessive quantities of amniotic fluid in its sac. They also use fetal dopplers to measure the blood flow of each baby and if a baby is struggling with blood flow, they often have absent or reversed diastolic flow which means each time the baby's heart pumps blood out, there is a backward flow of the blood through the umbilical cord.
At this initial appointment, Dr. Esplin felt that we needed further monitoring the following week before being able to determine if the babies truly had TTTS and how to proceed from there. I held it together in the office, but as soon as we hit the parking lot, I lost it. Burke, however, was completely calm. He reminded me that the blessing he had given me in April had said the babies would arrive whole and healthy. He smiled and said, "I guess this is just part of the bumpy road we were promised."
When we returned the next week, Dr. Esplin had returned to Salt Lake and our care was transferred for the duration of our pregnancy to Dr. Kurt Hales. Dr. Hales is worth describing because he was such a fantastic character. Brilliant, soft spoken, painfully blunt, thorough, sincere, committed and...completely awkward! The first visit we weren't sure what to make of him. After an our hour of being examined by Brett, he came into the room without introducing himself, sat down and began to use the ultrasound probe while muttering medical terms to himself and running his free hand nervously through his curly fro-hair over and over again. I remember at one point he described our situation in a thick textbook manner when I just laughed out loud and said, "I'm sorry Dr. Hales, but can you dumb that down for us?" Up until that point he had never made eye contact, but my laughter seemed to bring him out of a trance and remind him there were real human beings in the room with him. He seemed startled as he replied, "Oh, I'm sorry. I did it again." And then proceeded to explain his observations in a much clearer fashion.
From then on, I felt like we had a very comfortable relationship with Dr. Hales and as we observed how incredibly thorough he was and how much he genuinely cared about us and our babies, I grew to trust and even love his quirky manner. Sometimes he would get up, mid-ultrasound, and just walk out of the room without saying a word! Burke and I would look at each other in confusion and laugh, "Uhhhh? Are we done here?" But inevitably he would wander back in, energy drink in hand and pick up as though nothing had happened until 20 minutes later he would mention the text book he had consulted or the phone call he had made to obtain another physician's opinion. As bizarre as his behavior often was, we absolutely loved him and completely trusted him.
Me right outside of our MFM office. Those pink flowers always looked so pretty and gave me a little happy boost before we would go in to face the uncertainty and anxiety of the ultrasounds. I was only 24 weeks gestation here and measuring at 33 weeks for a normal pregnancy. Large and in charge!
As this downward digression continued, Dr. Hales informed us that the only treatment that existed for TTTS was a revolutionary new surgery within the last 10 years where a surgeon could insert a camera into the uterus and use a laser to cut the blood vessel connections between the donor and recipient twins, thus allowing the donor twin to retain his own blood. There are only a handful of surgeons in the entire United States who do the surgery, the closest options to us being in either Los Angeles or Seattle. Dr. Hales spoke very highly of Dr. Ramen Chmait in LA as he helped to invent the procedure and was praised as "the best" in this very specialized surgery. By our second appointment, Dr. Hales felt we were candidates for the procedure and began communicating with Dr. Chmait about our case. The only problem was our Baby A didn't follow all of the normal signs of TTTS and they don't like to send patients to get the surgery unless they are certain of the diagnosis. The other problem was the surgery can only be performed in the window between weeks 20-26 before it becomes too dangerous for the babies.
This was a very taxing time for our family as the hour trip to St. George, the 2+ hour apt, plus dropping and picking up the girls would turn these trips into 5 hour ordeals usually twice a week. As it was summer in St. George, it was a blazing 110 degrees or more as we walked across the MFM parking lot and I could always feel my already swollen pregnant limbs cry out in protest as the heat puffed them out even farther. Then once we exited, I was doubly depleted of water as the anxious tears would inevitably flow, making my head pound with intense headaches from stress and exhaustion as we worried about the babies as well as the strain on our daughters. Darcie was just 20 months old, so she was pretty oblivious to our situation, but our normally sweet 5-year-old Daphne became increasingly emotional and defiant as tremors of change and uncertainty shook her world over and over again.
Attempting normal life in the midst of anxiety. A much needed fun outing to the Bees baseball game in SLC on June 17 at nearly 22 weeks gestation, but measuring 30 weeks!
In the midst of all this turmoil, we moved from Parowan to Enoch where we began to rent a home my brother Elijah (who works at the embassy in Turkey) and his wife Marinda had purchased the month before just in case Turkey became too dangerous and the family needed to evacuate. We knew it was a possibility that a terrorist attack could bring them home at any time, but as Elijah had been called as the Branch President for the LDS church in Turkey, we felt confident that the Lord would keep him there and safe.
We were approaching our 2 week mark renting in Elijah's home when we went down on July 8 (just shy of 25 weeks gestation) for what felt like our zillionth appointment to St. George. After the standard hour long measurements, Dr. Hales came in and did his thorough examination. Burke and I were both nervous, knowing that this was possibly our last opportunity to qualify for the TTTS surgery. We weren't sure if we wanted to qualify or not, if it would be a relief or a gut wrench. Finally he said, "I think it's time to send you. There is no guarantee that if you go they will be able to help you, but if you were my daughter, I wouldn't wait another day." In a state of semi-shock, we agreed that it was go time.
Blurry belly shot the morning of our MFM appointment when they decided to send us to LA.
It was almost 5 o'clock and the staff scrambled to try and get through to Dr. Chmait's in LA to get us scheduled for a consultation on Monday and possible surgery on Tuesday. It was a bit of a whirlwind and as we left the MFM office, Dr. Hales came running out to us in the parking lot. In his socially awkward way he panted, "Look, I just want to make sure you know you don't have to do this. I mean, you can just tell me to go to hell and we can keep monitoring the babies here and try to intervene before Baby A passes. I'm just saying that if you were my daughter, I would send you." We reassured him that we felt it was the right thing to do to go to LA and that we appreciated his concern. It was touching to me that Dr. Hales, in his sporadic way, wanted to make absolutely certain we were comfortable with our choice and that he was so obviously concerned for us and our babies.
With that, we got in the car and began making a multitude of arrangements. It was on to LA and a chance to save the babies.
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