Melissa was so sweet when she sent me her story. She said that March 5th is the boys birthday, and if I could, it would mean a lot to have their story around that day. Of COURSE I could share it this week! A bittersweet birthday, one here, one in heaven, but we celebrate both boys!
What struck me when I opened up her story was that the ultrasound picture that she has is almost EXACTLY the same as one that I have of my girls… heads right next to each other, just hanging out! And, of course, we both delivered two live babies and had to say goodbye to one shortly after. I felt immediately bonded to Melissa. Her story is an amazing story of faith and love.
Please wish Micah and Spencer (angel) a Happy 6th Birthday as you read their story, written by their mother, Melissa.
Micah and Spencer
When people hear about TTTS experiences, I think they expect it to be a story with a beginning, middle, and end. The truth is, there is a beginning, but the story never ends. TTTS is life-altering. Regardless of quality of care, regardless of outcome–all survivors, some survivors, no survivors–it changes your life: it changes you.
There is nothing else in the world like being told you are having twins (or multiples). As soon as you get over the shock, joy sets in and you start making plans and start dreaming dreams, and you feel special. You’re having twins! And then TTTS tears the joy away, and it makes you afraid to make plans and dream dreams, because now your only hope, your only prayer is that your babies will live. That they will survive long enough to hold them in your arms. Beyond that is too painful to even think about. And for those that are never diagnosed, they don’t even get that transition. They go straight from dreaming of hands full to weeping with hands and arms empty.
Regardless of the beginning of the story, TTTS continues to be a part of your life, for the rest of your life, because it alters the way you look at things. It alters what is important to you, and it changes your dreams, plans, hopes, and fears. Your innocence is gone–and will be forever.
The following is the beginning of our story and how our innocence was–and continues to be–changed.
My story begins with a prayer. I had three boys and knew I wanted more children, and I had an overwhelming desire to have twins. I know, crazy! But I did, and I prayed and prayed and prayed to please let me have twins. I was just a little (or maybe a lot) obsessed, and the desire just kept weighing on my mind. Finally I said, “Heavenly Father, I really want twins, but nevertheless, Thy will be done.” And then I felt peace, and I knew that regardless of what happened, it would be God’s will. And it would be okay.
Well, I got pregnant. And my pregnancy was different enough from my other pregnancies (don’t worry, no details) that I was pretty sure it was twins. I didn’t want to hope too much, but I was reading about twins, looking things up on the Internet about twins, and just felt like it was twins. We had our first scan at 12 weeks. The day before had been a rough one (three little boys can be overwhelming sometimes), and I convinced myself that there was no way I was having twins because I couldn’t even handle the three I already had. So my doctor starts scanning and says, “are you sitting down?”, to my husband, “because their are two babies in there”. All I could do was laugh…. We were having twins!
We went out in the parking lot and called our parents right away. I started making plans and figuring out how to arrange the house, and where to keep diapers, and play sets and everything we would need. I started thinking about freezer meals and mom and mom-in-law coming to help. I thought about a million things all at once, and over and under and around and through it all was this tremendous joy. I went out that day and bought a book about twins. And then I went home and read it. I remember reading a short page and a half about TTTS and remarking to my husband “we really don’t want to get this” and reading out loud the part about 5% survival rate with no treatment…
Fast forward six weeks; with all of my previous pregnancies, I “popped” around 16-18 weeks along, so when I suddenly was bigger, and growing out of all my maternity clothes I thought nothing of it. I went to buy extra large size maternity clothes (normally I wear small or medium). The lady at the store said usually with a twin pregnancy you only go up one size. My response was “well I’m only half way along and I’m not fitting anything”. I thought she just didn’t know what she was talking about. I remember going to a family reunion with a cousin who was due the exact same day as me and being proud of how big my tummy was compared to hers. A week later we saw the perinatologist (my doctor tried to get me in earlier but he was completely booked- he only came up to our hospital twice a month, and his office was 1 1/2 hours away). So, I said we could drive down there. I didn’t know anything was wrong, I just knew that my doctor had told his nurse to book me an appointment “the earlier the better”.
So I went in for our 20 week scan, so looking forward to finding out the gender of our babies. I remember feeling like one of the babies was pushing against my ribs. It felt exactly like it did when my 9lb9oz 22″ long baby did when he would stretch out and push his feet against my ribs. I kept pushing my stomach down- it hurt. When I mentioned it to the ultrasound technician she said “actually it’s all this extra fluid”. And then when she was done she said “I have a lot more respect for you, I thought you were just being wimpy, but you have as much fluid as someone who is 8 1/2 months pregnant”… I still didn’t get it. And then the perinatologist took us into a special conference room, and started drawing diagrams, and explaining that our boys (yep, two more boys!) were sick, and there wasn’t a cure, but there were a couple of different options for treatment. We were in shock. He made an appointment for us to come back in two days (at a different hospital with a different perinatologist, since of course his hospital wasn’t a participating provider). As an aside, that one scan and appointment cost us more than everything else that was to come combined.
So, we came back. Our boys were re-checked, they were staying stable at a high level I. Our doctors, who I loved, again went over all of our options (do nothing, serial amniocentesis, and surgery) and the expected outcomes. Basically, at that time, doing nothing meant a 5% chance of any survival. And trying some treatment gave you a 60% chance of bringing both babies home to an 80% chance of bringing one baby home, with laser surgery having a slightly higher rate of survival. Our doctors suggested that we call around to the different treatment centers that did the laser surgery and consult with them about our case before it became an emergency. At the time there only were five centers (not five doctors) in all of the United States that had completed more than 50 surgeries. We talked to multiple doctors, and we decided because of location to family, we would fly out to UCSF to be evaluated. I had to have a signed note from my doctor saying that I was only 28 weeks, just in case the airline wouldn’t let me on the plane…
I flew out on a Thursday, and spent all day Friday having tests run by multiple specialists. At the end of the day, we had gone from a level I to a level II, and the surgeon suggested we have the surgery. We agreed and so the following Tuesday they performed fetalscopic laser ablation surgery. My boys shared the placenta pretty equally, and my donor even showed signs of improvement while I was still on the operating table. The doctors did say that the recipients heartbeat had dropped to around 60 for less than five minutes, and we might want to have an MRI performed. We decided not to because it would not change our plan at all–which was to keep those babies cooking as long as possible. Before we left he said he thought we had an 80% chance of taking both babies home. My happy moment in church that following Sunday was that “I was home, and so were both of my babies”- meaning they had survived the surgery, and were still fighting.
Things went well for the next two weeks. Fluid levels looked good, hearts looked good, etc. And then three weeks after surgery, I went in for my weekly check-up, and my donor’s bladder wasn’t visible, and there were membranes floating around. So, TTTS had returned, and it was possible they were now mo-mo. They told me to go home and come back Monday. I came back Monday with a bag packed- assuming I would be put on hospital bed rest. I had just hit 25 weeks the day before.
So they did an ultrasound and were able to determine that only my recipients sack had been shredded, so they were still separate, but my donor still had very little fluid, and no visible bladder. While they were performing the NST the technician noticed that I was having contractions- I was in labor and didn’t even know it! I was expecting to be admitted- but not because I was in labor! I was not supposed to be having these babies yet and it scared me.
I was sent to labor and delivery, where at 9:00 that night they were finally able to stop my labor. Once I was stabilized and all of the doctors consulted–including the surgeon at UCSF–they determined the only thing left to do was monitor the babies, and as soon as they would be healthier outside than in, we would deliver. I had ultrasounds and NST’s every day during the week, and heartbeat checks every four hours. Our goal was to make it to 28 weeks, where our boys had a really good chance of surviving without complications. I was on bed rest for three weeks, and at 28 weeks exactly I went in to labor that wouldn’t be stopped. I had decided I wanted to deliver vaginally, not knowing that delivering by C-section was the safer option. There was so little information at that time: we found two websites total that talked about TTTS at all, and even on those sites, the information was minimal. This was before Facebook: we thought we were pretty on top of things because we had a blog going just for our boys :-), but I digress.
So, I was in labor, and things just weren’t progressing- my recipient’s head couldn’t engage because there was so much fluid. So they decided to break my water. And flooded everything! And then my recipient’s heart rate dropped a bit, so they decided they should do a C-section. At that point things happened fast and got a little fuzzy for me. I remember them poking my belly and asking me if I could feel it, and I could (I had an epidural, but at a low strength), so they pumped me up again, and then everyone was rushing around, and I could still feel things, so they put something directly into the line. They had me switch beds (because mine was soaking wet) and I remember seeing blood on my hands. Everyone was rushed, They rolled me into the operating room, i could hear the doctor giving orders, they poked me again and I could still feel it, so they put me completely under.
When I woke up I was told that my placenta had abrupted, and I was hemorrhaging. I had one and almost two blood transfusions. Micah, our recipient, was 3 lbs. Spencer, our donor, was 1lb 9 oz. They were born at 1:34 and 1:35 PM on March 5, 2007. Spencer had to have a blood transfusion, and Micah had to have blood removed soon after they were born. That night, when I was able to leave the recovery room, they wheeled me on my bed into the NICU where I saw my boys for the first time. I barely had energy to raise my head, but I saw my boys, and my heart melted. They were so tiny, so fragile, and so perfect! I loved them even more than I already had. One of my prayers had been answered- they were alive. (Micah and then Spencer)
Three days later, I was so relieved because my milk had finally come in. I was going back to my room to pump, and the nurse called and said, “You should come back. Spencer is having a hard time. And call your husband: he needs to be here.” We lived two hours away from the hospital. My husband was home working but was planning on coming in later that day for a care conference with the doctors/nurses/etc. So my mom wheeled me back to the NICU and I went to my little Spencer’s side. He was almost black. He had had an episode where they had to work over him for 15+ minutes and ended up giving him a drug that effectively paralyzed him so he would stop fighting the ventilator and start breathing again.
As I sat there with my finger on my son, I prayed and prayed. “Dear God, I need a miracle, please help him to hold on until his Dad gets here, please, help him recover, I’m not ready to say good-bye yet, please, please, I need a miracle. Please God, not yet. Not yet.” That prayer was answered with a yes, and Spencer stabilized. That afternoon, after my husband arrived and spent some time with both of our boys, we went to our first care conference. My husband refers to that afternoon as the “Info-mercial from Hell” (“But wait: there’s more!”).
The neonatologist working with my boys, the two nurse managers, the two nurses, and the social workers assigned to my boys, plus me, my mom, and my husband, and possibly my father-in-law (?) were all crammed into a conference room, where they proceeded to list everything going wrong with my little babies. It kept going and going and going. We’d think they were done and then we’d hear another “and”. They said that their hearts and lungs were both failing, and on top of that they had extensive brain damage (PVL and brain bleeds in both boys). After they were done I said, “So if they get better they are going to be handicapped?” (Or something like that), and they said, “We don’t think they are going to get better. And if—if—they do, it is possible they would never be able to leave the hospital. They would need 24 nursing supervision, you need to seriously consider letting them go: both of them.” The doctors said that frankly, they were completely shocked by the results of the brain ultrasounds.
My sweet little boys, had been dealing with TTTS for 10 weeks now, they had a short reprieve after the surgery, but TTTS and a traumatic birth had made its mark, and we didn’t know what we were going to do. We were completely devastated. We had been prepared for the possibility of one or both of them having issues. We were in no way prepared to hear that they were most likely going to die. My husband and I went back to my room that night and wondered how in the world we were supposed to decide what to do. We had faith that our boys could be healed, and yet we also wanted to show God that we had faith in Him, and His will for our boys. So our prayer became this- “Dear Father in Heaven, we love our boys, and do not want to let them go, but if you need them, that is okay too. So, if it is alright with Thee, we are going to hang on to our boys as long as they stay the same, or get better. If they worsen then we will know they are being called home, and we will let them go.”
The next day, the neonatologist said “I got a second opinion of the head ultra-sounds, and the second opinion wasn’t as harsh as the first, I suggest you hold off on making a decision, we will run all the tests again next Monday and have another care conference after that.” So we spent the weekend sitting beside our boys, reaching fingers in to rest lightly on their little heads, and introducing them to family and friends who traveled long distances to meet these little boys who might not be with us much longer. I remember the first time I was able to reach my arms in the incubator and hold my little Spencer up while they changed his bedding underneath, I was filled with overwhelming love, and felt love back from him. One time as we were sitting watching, Spencer had his eyes open, and he was just looking at us, telling us as best he could that he loved us.
I was able to do the same with Micah, and oh it was marvelous to feel each of their weight in my arms.
The tests were run Monday, and a care conference scheduled for Tuesday. Before I had left for the hospital Tuesday morning, my husband called: the doctors had called him and Spencer’s bowel had perforated in the night. Given how sick he already was, there was nothing they could do. Our little boy was dying. On the drive to the Hospital I watched out the window, praying “God, I know he can be healed, I know thou hast the power to bind up the holes. I know miracles are possible. But if not, if he is being called home, then I give him to Thee, Father in heaven. I am giving him to you. Please take care of him for me.” I hurried to the hospital and to my sweet little boy. Seth was again at home, two hours away and the doctors kept asking when he would get there, worried that Spencer would pass before he got there. Spencer held on long enough for his daddy to get there, and long enough for the nurses to unhook him from everything, clean him up, and bring him to us. He died after just a few minutes in our arms. We had eight precious days with him. We held him in our arms for the first time, told him how much we loved him, kissed him, took some pictures, and cried.
And then, concerned for our other son, we decided to go ahead and see what the doctors had to say.
So, care conference number two: “Micah is probably just a few days behind his brother. You should really consider just letting him go with his brother.” We sat and talked about it for hours. If the doctors were right and he was going to die anyway, why prolong the pain? Why have to put their brothers through the pain of losing one brother, and then a few days later, losing another? If we were going to have to say good-bye twice, let’s just do it now.
But what if- what if the doctors were wrong? Can we really handle letting him go? We just didn’t know. We felt like either way we decided would be okay: not right or wrong. And so, not wanting to wait, and then go through all of this again, we made the decision to let him go. And we went to visit him, and we were again unsure. He looked like there was nothing wrong (other than prematurity), so my wise husband said, “If we don’t know for sure, then we should wait to make a decision.” And so we did. That night we told our three older boys that Spencer was very sick, and had gone home to Heavenly Father and Jesus. We had made an effort beforehand to teach them about God, and when we were first diagnosed, about heaven. The next morning the doctor called for permission to perform a simple procedure (having to do with his IV), I felt like if we were going to let him go it would be pointless. I looked at my husband and said, I think we need to stick to our original game plan, if he gets worse we’ll let him go, if not we hold on. He agreed.
That Saturday day we laid our precious child to rest- it was the only time I saw my husband cry.
And then started a three-month-long NICU ordeal. After holding steady for three long weeks, my Micah started improving. My husband and oldest son stayed at home for school and work, and I and my other two sons lived with my in-laws during the week since they were closer to the hospital and so my MIL could watch my two boys while I went in to the hospital every day to be with Micah.
On the weekends, we would go home to give my children a sense of normalcy and so we could be together. We would go to church Sunday, and then my husband would drive down to spend a few hours with Micah and then come back. Then on Monday, we would do it all over again. My in-laws would usually go in on Saturday so Micah had someone visit him every day. He was on the ventilator for six weeks. It was just over six weeks before I was able to hold my baby in my arms, outside of the incubator. He was on CPAP for two weeks after that, and when he made it to oxygen, it was discovered he had hydrocephalus and had to have brain surgery to place a catheter and a tube draining the fluid his brain couldn’t absorb due to his brain bleeds from his brain to his abdominal cavity. He was just two months old, and still six weeks shy of his due date.
Up to this point, Micah had not been able to eat anything by mouth. I wanted to try breastfeeding him. We tried, and the doctors were so kind. They let me discover on my own timeline that my little boy was not capable of getting food that way. They wanted to place a G-tube, but I wanted to try a bottle before that, so I asked what a realistic time frame would be, and then requested I have that much time to try a bottle. So, with much coaching from nurses and the Occupational therapists, we tried the bottle. And he did it! I had to count sucks, and remind him to breathe, and it took over an hour sometimes, but he did it! A week later, 96 days after he was born, my Micah came home. His official diagnoses were/are Cerebral Palsy, Optic Nerve Hypoplasia (his optic nerves were smaller than they should have been- which meant he was visually impaired), chronic lung disease, reflux, and medically fragile (susceptible to getting sick). The neurologists said that Micah would probably never walk, never talk, with a more than 85% chance he would never progress beyond infant stage. Despite everything, he is the happiest little blessing in our family. Micah gets joy out of life, and shares it with us. He has proven the doctors wrong by living, and is slowly proving them wrong by continuing to progress, slowly but surely.
All of the dreams that existed before TTTS are dead now. Our hopes, our dreams, our outlook on life has all been altered. We have been altered. It is now six years since my twins were born, and TTTS continues to shape our lives, as each day we miss our sweet Spencer, and each day we care for Micah. However there is one thing that TTTS has not, cannot change. And that is how much we love our boys, our identical twins, Micah and Spencer.
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