Let’s Talk About It

Tonight, after a rough day with three kids, my husband said, “Hey, do you remember I told you that [a coworker’s wife’s] coworker and his wife were going through TTTS?”  Um, no.  I hadn’t heard about it.  I guess the coworker’s wife offered to give them our information, but I assume they didn’t take it.

These people, who live in our county, presumably, were diagnosed with TTTS just over a month ago and were told that surgery wasn’t an option.  So they did nothing.  And she delivered the babies within the last week, allegedly at full-term.  One of the babies died as a result of TTTS.  The other baby and the mom both had major complications and almost died.

Upon hearing this, I burst into tears.  Why?  Because maybe I could have helped them.  Maybe I could have helped them find the right doctor who would have done something differently and saved that precious baby.  I don’t know WHY they were told that surgery isn’t an option.  I know that when I had the laser surgery, we were a few days past the typical cut off, which is 26 weeks.  Now, at 26 weeks, the babies are technically viable and could be delivered if that’s the only option.  With my babies, the damage was so severe that one or both may have died if they were delivered then.  I had one of the most skilled TTTS laser surgeons in the world perform the surgery, and we are fortunate that it worked.  So if this mom was past the point where surgery was an option, the babies should have been viable.  There’s a point where the best option is delivery.  Who was her obstetrician or MFM?  They should have been monitoring her like crazy so that the babies could be delivered at the first sign of any trouble.  Maybe they were.  TTTS can progress so quickly.  I just hope they were as informed as possible.

I know shit happens.  I know you can’t control everything.  I know that it’s tough to be your own best advocate and tell your doctor what you really need.  But now I know of a network of parents whose lives were forever changed by TTTS.  These parents, including me, will do anything to prevent another family from the heartache that we’ve experienced.  They are a wonderful resource for those who are experiencing TTTS in their pregnancies and parents who are living with the outcomes — positive, negative, and everything in between.

This family’s loss shook me.  I know how fragile the situation can be, but just last night, I posted on Facebook a photo memory from this time last year — when my belly really popped, which was one of the first signs of TTTS that I experienced.  I asked my friends to share my story and to give my information to anyone they know who is having twins, especially monochorionic diamnionic twins.  I want to help.  I know that even with all the issues that our Baby B has, we are the lucky ones; she’s here in our arms.  We don’t know what her life will be like, but she has one.  So many have lost one or both of their TTTS babies.  I want to support the TTTS Grief Support Team as much as possible.  I want to be a resource for other moms.  I need to spread the word about TTTS because of how much it has rocked my world.  One of my missions in life (other than raising healthy, upstanding children) is to spread awareness and do whatever I can to prevent this disease from ravaging other families.

Please, share our story.  You never know who you might help.  If a friend seems reluctant, give me their information, and I’ll contact them.  I don’t care about being pushy if it might save a life.  Hug your babies tight; there is nothing more precious.

To read about the rest of our TTTS journey, click here.

The Eyes Have It

Last week, we revisited the place where our babies’ lives were saved, at Jackson Memorial Hospital.  Specifically, we went to the Bascom Palmer Eye Institute with Baby B to see what we could do about her crossed eyes (strabismus).  The local ophthalmologist saw her, heard a bit of her history, and said that he probably was not the right doctor for her, because he didn’t really work with children who have neurological problems.  We appreciated his candor, but it felt like a wasted appointment.  However, he referred us to Bascom Palmer, and we realized that it was the best decision for our little one.  The ophthalmologist (and his team) were very thorough, and the appointment took about five hours.  At the end, we were told to patch our little one’s good eye for half of her waking hours.  We could be doing this until she’s ten YEARS old.  She also may need surgery, but the good news was that each of her eyes independently seems to have pretty good vision, so she doesn’t need glasses yet.

I had a lot of feelings as we went to Miami and drove onto the campus of the hospital, which is also the campus of the University of Miami medical school.  Somehow I missed that fact back in September, so now it makes more sense that there were 30 people in the operating room when I had the TTTS laser surgery — they were medical students!  I was brought back to September, to walking into the emergency room, asking where the Fetal Therapy Institute was, being told to walk that way, take the elevator, go down the halls, etc.  I remembered sitting at the fountain with the kind nurse who brought me preemie diapers to put in my bra (they had no nursing pads, but the surgery made my milk come in quickly), talking about her kids and watching a little boy play in the area.  I thought about the hours-old tuna sub that I didn’t really eat the night before surgery while I had the long ultrasound.  Although I didn’t really walk around the hospital in September, just being so near to where I experienced some of the hardest times of my life brought back a flood of emotions.

I looked at sweet Baby B, with her bright eyes and long eyelashes, her tight muscles and crossed-eyes, and I was so damn grateful that I had these memories of Jackson Memorial.  Without that surgery, I believe she would have died immediately, and Baby A may not have lived either.  The TTTS had progressed too far for their 26 week bodies to handle.  I am so thankful for the world-class surgeon who performed the surgery, particularly as he has since stopped practicing and stepped down from his position at the Fetal Therapy Institute.  He performed the surgery just in the nick of time (based on Baby B’s current health, I feel comfortable saying that even waiting a few more hours would probably have been fatal).  The babies were not born in September.  They did not have to spend months in the NICU in Miami.  We did not have to bury either of our girls.

Even though Baby B has a lot of issues stacked against her, she is still happy (unless she’s not being held — then she’s mad), beautiful, and lights up so many peoples’ lives.  The people at therapy love her.  Even the therapists who don’t work with her will seek her out to say hello and remark on how much she smiles.  She’s moving her arms and opening her hands more.  She’s getting on track to sit.  She’s a snuggle bug and can only sleep when she’s snuggling with someone.  She loves people.  She loves her family.  She laughs when you nuzzle her belly.  She’s just our little sweetheart.

Baby A is almost sitting on her own.  She’s trying out food and making all kinds of different sounds.  She likes toys and raspberries blown on her belly.  She grabs her toes a lot and tries to take off her socks.  She’s very calm and loves to sleep, but sometimes her sister wakes her up.  She can roll over, but sometimes she forgets and gets stuck — and then she really complains!  She kicks and grabs and is also our little sweetheart.  Both babies are just perfect.

After a picnic with other moms of multiples and seeing some of the babies, I felt a little sad about how Baby B doesn’t look like Baby A, even though they’re supposed to look alike.  My husband said the best thing he could have, “Baby B isn’t supposed to look like Baby A; she’s only supposed to look like Baby B.”  (It sounded better when he said their names, but I’m not ready for them to be out there yet.)   Even though they don’t look totally alike, they have the same little noses and perfect baby lips.  Their eyes are the same deep blue/gray, and they both have long eyelashes.  They like to lay next to each other with their hands and arms entwined.  I think that Baby A is going to make sure her sister reaches her full potential (the rest of us will help, too, of course).

More Bad News

The day after we came home, my mom insisted on having a birthday party for my son (a week early), because she was heading to Ohio during his actual birthday the following weekend.  I tried to rest, but I, of course, had to come out to sing happy birthday and be with him.  He was so unsure about what was going on, and it was hard for him that I couldn’t play with him or pick him up anymore.  There were nights when he would snuggle in bed with me, then start kicking or pushing on my belly.  He just wanted his mommy back.

When we went for a follow-up ultrasound the week after surgery, Baby B still did not have a visible bladder and she still had little fluid around her.  Baby A looked great!  Dr. MFM was concerned, so I was to come back in 3 more days for another ultrasound.

Three days later, Baby B finally had a visible bladder!  We were thrilled that she was making progress, however she was still much smaller than her sister.

The following weekend was our toddler’s actual third birthday.  We had a party planned for our family, and I tried to relax as much as possible as he opened monster trucks.  He had a nice birthday and really enjoyed his presents and monster truck cake, specially made by Papa.

That Monday, our toddler had an appointment for his 3-year check-up about an hour after my appointment with Dr. MFM, so my dad came up and brought me to my appointment so my husband could leave work to pick up our toddler from the sitter’s and bring him to the pediatrician.

Dr. MFM again came in during the appointment.  He was concerned about the size difference between the babies, and he initially said that he wanted to send me to the hospital for monitoring and likely delivery.  Luckily J, the ultrasound tech, mentioned that she saw signs of breathing and movement during the ultrasound, so Dr. MFM loosened his stance a bit.  He stated that he  thought that the girls would need to be delivered within the next two weeks.  Baby B’s kidneys were also enlarged.  I was so upset.  My dad held my hand as I cried and asked what we needed to do, because the babies were only 27 weeks.  I knew we had a long way to go in order to have healthy babies.  Dr. MFM provided no additional support.  He just explained “the facts” like a robot.

Dr. MFM said, “Well, if you deliver now, you’ll have two very sick babies.  However, you can choose to keep the pregnancy going and focus on getting Baby A here safely and forget about Baby B.”  I couldn’t believe what I was hearing.  I was flooded with emotion, and I couldn’t wrap my head around what he was saying.  Forget about Baby B?  Just move forward with the pregnancy, knowing that I might just have one baby at the end?  It was so hard to even imagine.

I left that appointment sad and confused, but I made it to the pediatrician’s office for my toddler’s well-visit.  I briefly told my husband what Dr. MFM said, and we just could not make sense of it.  So I called Dr. OB, who returned my call and tried to clarify that if there is a problem with Baby B becoming growth-restricted, it would be safer for her health for the babies to be delivered than for her to continue in utero.  He answered my important NICU questions.  The local hospital has a Level II NICU, but a baby must weigh at least 1000 grams in order to be able to stay in that NICU.  He spoke with the neonatologist, who said that if one of the girls is OK and able to stay in the local NICU, but one had to be transferred to APHC in Orlando, they would try to make sure that BOTH babies would be transferred (if they were stable), so that we would have both of our babies in one place.  Having a child in the NICU is difficult.  The only thing more difficult would have been having two children in two different NICU’s in hospitals an hour apart.

Dr. MFM was going out of town, so we were unable to chat with him for another two weeks.  I would still be seen in his office, but I would see doctors from one of the other office locations.  Dr. MFM also wanted me to receive a second round of steroid injections to ensure the babies’ lungs matured at birth.  I was told I had to have the injections the following week at the hospital.  However, when I came back the following week, the new doctor who we saw said that everything looked fine.  He was happy, kind, and even joked with us.  He did not want me to receive the steroid injections, because it looked like the babies were able to stay put…but I had already had the first injection the night before, so I needed to get the second one anyway.  Apparently, a pregnant woman can only receive the steroid injections twice, no more, during each pregnancy.  Plus, they were only effective for a few days, so if the babies weren’t born pretty soon, the shots would be ineffective AND I would not be able to get them again.

We were just happy that Baby B finally looked good, and we hoped that this meant she would continue to grow and be healthy and stay put until the end of the pregnancy.  Her kidneys were still enlarged, and we were told again that it was just something that they would keep an eye on during the pregnancy and after she was born.  She had fluid around her, so it appeared that her kidneys were working.  We were never under the impression that it would be a big deal at all.

To read about the rest of our TTTS journey, click here.

Surgery and Back Home

At just before 7 a.m., some members of Dr. Quintero’s team came in to my room to go over paperwork, do a last-minute ultrasound to get another look at the babies and the presentation of the placenta, and prepare me mentally for surgery.  They started to move me to surgery (on another floor, in another part of the hospital) around 8 a.m., and my husband was not allowed to come with me.  We knew this ahead of time, but it was still tough to face those hallways alone.

The operating room was one of the largest I’ve ever seen.  It was at least four times the size of the operating rooms at the local hospital where I had my c-sections.  There were people coming in continuously, and I venture to guess there were at least 25 people in the room.  Only a few of these folks introduced themselves to me; it was very unnerving.  I was given a sedative to relax me, but not put me to sleep, right before I was transferred to the operating table.  The anesthesiologist also gave me some Benadryl to combat itching, which I had experienced in the past while receiving anesthesia.  There were two Labor and Delivery nurses at the end of the table and incubators at the ready in case the doctor needed to deliver the babies via c-section.  I was 26 weeks and 2 days at that point.

The nurse inserted my catheter, and the team began to prep for surgery.  Dr. Quintero came in with additional staff, and by that point, I was pretty tired and so grateful for the sedative.  I felt a bit of a sting when the local anesthetic was injected into my belly, but that was pretty much it.  I kept dozing off, but the anesthesiology assistant shook my shoulder to keep me awake, because when you sleep, you breathe deeply, which moves the placenta too much.  For such a delicate surgery, every little movement was critical.

I remember Dr. Quintero saying that he was severing the last of the vessels before he began removing fluid from Baby A.  I could breathe easier immediately when he removed the first batch of fluid.  He ended up removing FOUR (4!) liters of fluid from Baby A (imagine 2 2-liter bottles IN YOUR BELLY).  The doctor could have removed more, but he did not want to risk placental abruption by removing too much fluid.

I had the opportunity then to see my beautiful girls through the camera on the fetoscope, but I was so drowsy that I just couldn’t focus.  I vaguely recall seeing some limb-shapes projected on the screen.

Dr. Quintero said that one of the vessels the girls shared had become so huge it essentially became a fast track for the blood to flow from Baby B to Baby A.  Once the blood starts flowing in one direction, it no longer goes back and forth between the babies.  He realized before he removed the fetoscope that there was one tiny vessel that he almost missed.  He cauterized the vessel and left to speak with my husband.  I was basically passed out, but I remember being wheeled through the halls and up the elevator to the recovery room.  I had a nice, warm blanket, and I could finally breathe.  My back pain almost immediately subsided.  I took a nap and woke up to text and e-mail my friends and family to tell them that the surgery, according to Dr. Quintero, was a success!  We just needed to get through the day and have an ultrasound the following morning to see if the babies were responding to the surgery.

I spent all day in recovery, and I mean all day.  The recovery nurse kept waiting for me to be transferred, and we contacted nurse B with the FTC to see if I would be able to be moved to a nice room up there.  My husband and I were both looking forward to getting some sleep, and the suites promised a couch where he could sleep, too.

On the other side of the curtain, a woman waited.  And waited.  And waited.  She had been waiting to be brought back for her c-section since well before I got back to recovery.  This meant that she had not eaten all day.  I felt really bad for her, because she just could not get a straight answer about when she would be taken back for surgery.  The doctor on call finally came back and spoke with her, telling her that there were some emergencies that had to be fit in, but if she wanted, she could come back first thing in the morning and be put on the list then.  She waited and finally was taken back at about 8 p.m.

My catheter was finally taken out in the early evening, and still we waited to be sent to the floor.  We were basically told that they were understaffed, and we needed someone to come down to get us and bring us up to the room.

Finally, someone from the Labor and Delivery floor came to get us and bring us to one of the nice suites in the FTC section of the floor.  I was the only patient in that wing, but a nurse from Labor and Delivery was assigned to take care of me.  She was very kind and made sure I had drinks, towels, and a clean nightgown to put on.  Even though it was around 9 p.m., fairly early for two adults, we just turned on Shark Tank for a few minutes and went to sleep.  I slept well enough (as well as any pregnant woman does), and was awakened at 5 a.m. when the nurse came in to draw blood for my post-operative labs.

My husband and I both showered and got our things all ready to go while we waited for the ultrasound tech to come and get us.  We thought it would be around 8 a.m., but it was more like 10 a.m. when she got there.  Luckily, my husband was able to go and get some breakfast from Au Bon Pain, because I they forgot to bring me breakfast (since I was the only patient on that part of the floor).

We went back for the ultrasound and were pleased to see that the babies were still alive and looked pretty good, considering the circumstances.  Baby B’s bladder was still not visible, but she had a bit more fluid, so we had hopes that she would continue to improve.  Baby A was happy with the lessened fluid, and, although her bladder had thickened as a result of the fluid she was trying to process, it looked smaller and a little better already.  Dr. Quintero came in and expressed confidence that the surgery went really well.  He believed we would have two healthy babies when they were born.

We were discharged from the hospital to go home.  I was told to remain on bed rest for at least a week and see Dr. MFM for an ultrasound on Tuesday.  After that week, Dr. OB and Dr. MFM would decide whether I needed to remain on bed rest or not.

During the long drive, all my emotions and anxiety overwhelmed me, and I started to get very depressed.  I cried most of the way home, while my husband spoke to his mother and sisters to tell them about the surgery.

I was so happy to see my toddler, but I couldn’t hold him, which was very difficult for both of us.

“Where are my baby sisters?” He asked.

“They aren’t ready to be born yet.  Mommy has to lay down to try to keep them safe in her tummy as long as possible.”  He understood as much as an almost-3 year old could.

My parents had come up to clean our house before we arrived home.  It was a relief to come home and not have to worry about laundry or bathrooms.  I went to lay down in my own bed for the first time in three days, but I was having difficulty breathing.  My mom wanted me to go to the hospital, but I worried that they wouldn’t understand what I had just been through.  I called Dr. OB’s on-call number, and he called back fairly quickly.  He said that it was probably just from the shifting around during the surgery, but he wanted to see me the next day to check my lungs and make sure everything was ok.  My mom kept insisting that she should speak to him, as she always thinks I’m still 8 years old and need her to speak to medical professionals for me.

We also left a message with Dr. Quintero, and he too was not worried about my breathing problems.  I was finally able to get to sleep and begin the long process of keeping my babies safe until the latest possible date — ideally, they would be born the first week of December, and it was only September 20.  I had a long road ahead, but at least we seemed to have climbed this hurdle successfully.

To read about the rest of our TTTS journey, click here.

The Night Before Surgery

We drove through the hospital’s campus, the largest hospital I’ve ever seen, and attempted to navigate which entrance we needed to find.  My husband dropped me off so I could start to check in while he parked the car.  I found my way to Labor and Delivery through an office area and down hallways that were covered with construction materials.  Apparently the Labor and Delivery portion of the hospital was undergoing a much-needed renovation.

I went to the desk to check in and was sent to the triage area, where I filled out some forms and had my blood pressure and temperature taken before giving a urine sample.  There was a woman in there (pregnant, obviously), who had a small child with her and was coughing and hacking into a paper towel like she had tuberculosis.  My husband sent me a text message saying that the guard would not let him back to be with me, since I hadn’t been admitted yet.  I also got a call from Dr. Quintero’s nurse, B, asking where I was.  Apparently, the Labor and Delivery section is together but separate from the Fetal Therapy Center (“FTC”), although the FTC is on the same floor.  They have a separate staff for the FTC, and their suites are much nicer than the typical hospital rooms.  That made me feel better, as I was put in a triage room that was straight out of the 1970’s, and may have had original 1970’s dirt in it.  I’ve never been in a dirtier hospital room, and it (along with everything else going on) made me so uncomfortable.  However, the doctor wanted me to be hooked up to the monitors to make sure I wasn’t going into labor, so I waited on this thin stretcher while the triage nurse attempted to get both babies’ hearts on the monitor.  I hadn’t really slept at the local hospital the night before, and the exhaustion (and the pain) was really wearing on me.

Finally, I was brought back to the ultrasound room in the FTC.  It was clean, nice, and the ultrasound tech was so sweet and kind.  She warned us that this would be a 2-3 hour ultrasound, and I would likely be very uncomfortable.  Allan went to get some food for us for dinner, and we got to work with the ultrasound.  The tech needed to get accurate measurements, as well as dopplers for the babies’ hearts, umbilical cords, and brains.  If there were signs of brain damage, we would not be able to move forward with surgery.  If I went into labor, we would not be able to move forward with surgery.  We were just waiting and counting the hours until the surgery so that we could give our babies the chance to survive and hopefully thrive in the womb for at least a few more weeks.  Dr. OB called to wish us luck and remind us to get the second steroid injection (I had one the night before at the local hospital), which would help the babies’ lungs mature so they could breathe if they had to be born the next day.

Three hours after the ultrasound started, around 10 p.m., Dr. Quintero came in to speak with us and take some additional ultrasound images.  He measured my uterus, and it was measuring 51.  This was just two days after it measured 43.

I wish I had taken pictures of my huge belly, but I had other things on my mind.  The difference was all attributed to the crazy increase of fluid.  Baby A, the recipient, now had a MVP of 21+, and Baby B, our donor, had no fluid.  Baby B also had no visible bladder.  Dr. Quintero said that he had never seen anyone with so much fluid.  The ultrasound tech corrected him, and he said that he had never seen anyone with so much fluid who hadn’t gone into labor and lost the babies.  A lot of the time, TTTS comes on slowly, but in my case, and in the case of many other unlucky families, it comes on very rapidly.

Dr. Quintero classified our case of TTTS as a modified Stage III due to the severity of the fluid imbalance.  Typically, a Stage III case shows signs of abnormal blood flow in the umbilical cords of the babies.  He again went over the probabilities: 80% chance that we would have one live, healthy baby, and 50% chance of both surviving.  He also explained that there are multiple complications that can arise, and multiple health issues that can arise as a result of the TTTS and the laser surgery, including, but not limited to, brain damage, kidney damage, heart problems, death of one or both babies, or death of the mother.  He went over the surgery, which was scheduled for 7:30 a.m. the following morning.  During the selective laser photocoagulation of communicating vessels for twin-twin transfusion syndrome, the mother is awake, but drowsy, during the procedure, and with a local anesthetic is provided at the site of the fetoscope (like an endoscope).  The doctor goes into the uterus with the fetoscope and severs the blood vessels that the babies share.  Fluid is also removed from the recipient’s amniotic sac.  Following the surgery, the babies will each have their own separate sources of blood flow, so each baby’s fluid should balance out, and the donor baby’s bladder should return.  For more information about TTTS and the surgery, look here: http://www.jacksonhealth.org/fetal-therapy-ttts.asp

Dr. Quintero scheduled the surgery for 7:30 a.m. the following morning.  By the time we were through with the ultrasound, it was 11:30 p.m., and I still needed an I.V. and blood drawn, the steroid injection, and I needed to be hooked up to the monitors to make sure I didn’t go into labor.  If I went into labor, he would have to deliver the babies, who, if they survived, would have the difficulties and obstacles that extremely premature babies have.  There was definitely concern that I wouldn’t make it through the night without going into labor and would not be a candidate for the TTTS surgery.

Because the doctor wanted me to be monitored for contractions, I needed to go to the Labor and Delivery floor, rather than stay in one of the FTC suites.  However, there were no rooms immediately available, so I was placed back on the stretcher in the dirty triage room.  My husband had only a hard plastic chair to try to nap on, and I was again on an uncomfortable stretcher.  The nurse came in and I asked when she thought I would have a bed, because I was so tired and was having surgery in the morning.  She was a real bitch and snapped at me that she didn’t know and they were very busy so I would just have to wait.  She expressed no sympathy or empathy at all.  Typically, at the local hospital, if you’re pregnant and in Labor and Delivery for any reason, everyone is really kind and caring.  They always ask if they can make you more comfortable.  Here I was, measuring way past full term, with babies in distress, hoping to make it through the night, and this woman was such a bitch.  I will never forget how nasty she was.  Luckily, she seemed to be the exception at this hospital, as most of the other staff members were very kind and caring.

This bitchy nurse needed to start my I.V., and she started it in my left hand.  My hand was shaking, but I had nothing to rest my arm on because I was on a stretcher.  She snapped at me to keep my hand still or she would have to start another I.V.  I was in tears.  She had to take literally 14 vials of blood, because my medical records were not sent in their entirety, so the doctor needed to do many tests that I already had done.  She gave me the second steroid injection and still had not one kind word for me.  I couldn’t believe how awful this woman was being, but I hoped they would transfer me to a bed soon.

My husband and I both nodded off periodically in our uncomfortable positions, and we finally were moved to a Labor and Delivery room just after 2 a.m.  Someone came in for the THIRD time to change my hospital bracelet and put my maiden name as my last name.  I already had them correct the bracelet after initially coming in, and for whatever reason, they thought it needed to be changed again.  The nurse in Labor and Delivery asked me the same 100 questions that the bitchy nurse and the earlier triage nurse asked.  Apparently they all just wrote the responses on paper and then promptly got rid of it.  This nurse finally put the answers in the computer — answers to questions like “what date exactly did you have a bronchoscopy when you were 14.”  It was about 3 a.m. before my husband and I could attempt to get some sleep.  It was obviously a very restless evening, but at least I had a bed to lay in while I tried to rest up and hoped and prayed that my babies would be safe.

To read about the rest of our TTTS journey, click here.