Labor!

On December 20th, I spent the vast majority of the day sleeping on the couch. I had a general feeling of yuck and just didn't feel good. We had committed to a friend's Christmas party that night and Mike insisted we bow out. He said I clearly wasn't feeling up to it and that my friend would understand at almost 9 months pregnant with twins that some days you just couldn't do it. 

At around 1:30 am, I woke up suddenly. I vaguely remember feeling something in my abdomen and started paying attention. I got up to walk to the kitchen and get some water. It crossed my mind that I may be having some Braxton hicks contractions so I wanted to see if walking or drinking water would stop them. After about ten minutes of feeling contractions and not getting any relief, I decided to wake Mike up and see what he thought. We timed my contractions for about ten minutes and I was averaging one minute contractions every 3-4 minutes. Seemed like active labor to me. We tried calling our backup emergency person a few times but they had their phone on silent and didn't hear it ringing. We finally decided to pack up Zachary and head to the hospital with him in tow. 

On the ride to the hospital, Mike contacted the on call OB from my office and she was pleased that I was already on my way in. I don't remember much from the ride to the hospital except that it HURT very badly. Mike told me that I was using some choice language and he was worried that Zachary would pick something up that we didn't really want him to. Apparently Zachary continuously told me to breathe the whole ride. 

When we arrived at the hospital, Mike asked if I could walk across the walkway from the garage to labor and delivery. I told him no so he pulled up to the circular driveway in front of the doors closest to L&D. We pulled in behind an ambulance and as I got out of my car, the paramedics were returning to their vehicle. One asked if I was okay and I told him no, pretty sure I'm having some babies tonight. He told Mike to go park the car in the garage and that he would walk me up to L&D. I grabbed his hand and we headed off. He told me as we entered the elevator that the only rule he had was for me not to deliver in the elevator please. 

When we got to L&D, I approached the triage nurse and was in so much pain. I laid across the counter as they asked questions and remember snapping at the nurse when she told me to breathe through the contractions. They brought me back and hooked me up to the monitors. The nurse was pleased to see that the twins were doing just fine - they were in no distress whatsoever. Mike and Zachary appeared at some point (this is all a little hazy), and the nurse decided to check and see if I was dilated. Both Mike and I were shocked when she announced that I was dilated to 9.5 cm. I yelled that I couldn't have the twins vaginally, my son had hydrocephalus and his head was too big. Mike informs me that it was at this point that the previously calm and collected nurse leapt across the room and hit the emergency button calling for a stat c-section. I don't remember much except that there were suddenly a TON of people in the room, they were all doing stuff to me and I wanted to push so bad. They told me over and over "don't push don't push". Then I was being wheeled away and Mike and Zachary were left behind. I heard Mike shout "I love you!" as I was wheeled out of the room. 

Then I was in the operating room. The anesthesiologist told me he would give me one chance for a spinal but if it didn't work, they needed the babies out so he would have to put me under. I begged him to make the spinal work and that miracle maker did. I became very frightened as I realized I was about to have surgery and the same anesthesiologist stood at my head and distracted me until I was calm again. 

I heard a cry and the anesthesiologist said "you hear that? One of the babies is out!" I heard the on call OB say "it's a girl!" And our daughter was born. The anesthesiologist told me to look to my left, and there in the window of the operating room stood Mike and Zachary. While they couldn't be in the room with me, they were there watching and that was almost as good. The OB suddenly said "close the blinds close the blinds close them!" I became scared and asked if everything was okay. They all reassured me it was fine, and I later learned that our son's head was stuck and the OB was having difficulty removing him. Then he was born. I saw him for a brief blurry (I had left my glasses with Mike!) moment and then he was whisked away to the NICU. 

Waiting for the end

After meeting with the neurosurgeon there wasn't much left to do except keep baking babies and visiting my high risk doctor and my OB. 

We scheduled the c-section for December 30th and the shunt placement surgery was scheduled for December 31st. 

It was a quiet calm and my doctors continued to do what they could to keep us relaxed. 

Because I was considered high risk due to gestating multiples, I had NST (non-stress test) monitoring beginning at week 34. Basically, you go to the doctor, sit in a comfy chair and they put monitors on your belly. They want to see a resting heart rate and an active heart rate within a 20 minute period to make sure that the babies aren't in distress in utero. It's important for multiples because they start to run out of room and can become stressed. My first NST showed that twin A (the girl) was showing signs of stress. They asked me to come back in two days for further monitoring. I decided I should probably pack my hospital bag, just in case. (For the record, I procrastinated still). On Friday, the results of the NST were much better and I was sent on my way and instructed to come back in a week. The following week, I was back for the NST and found out that I was having minor contractions. Nothing big, but they were happening and they were measurable. My OB warned me that even when you schedule them, twins like to make their own birthdays and now that I was beyond 34 weeks, they would not attempt to stop labor should it begin. The twins and I had a quick talk to stay put. I signed my consent forms for surgery and was scheduled for my intake appointment at the hospital. We just needed to make it to December 24th as that's when our help flew in. We were fine. 

Neurosurgeon

It felt strange to be meeting with a doctor who would eventually perform brain surgery on the child I was currently growing. Getting the meeting with the doctor proved a little difficult initially. When the office called us to set up the appointment, they initially tried to get us an appointment with the neurosurgeon's partner. While I'm sure the partner is an amazing physician and surgeon, his specialty is in epilepsy and ways that brain surgery can relieve the symptoms of that. The surgeon we wanted to see is the leading expert in hydrocephalus in the region. The receptionist explained we would have to wait over a month to see that physician, and we replied that was fine (our hydrocephalus patient was still baking - clearly we had time). The receptionist placed us on hold, apparently consulted with the surgeon's physician assistant, got back on and told us to come in in a week to meet with the surgeon.

The day of the consult, we presented ourselves to the office and found ourselves in the waiting room by ourselves. A man in a lab coat came out carrying a bag full of comic books from the store that Mike and Zachary liked to shop at for comics. He went into the area of the waiting room reserved for children, sat down on a child sized chair and began weeding out comic books from the book shelf on the wall. Each time he removed a battered comic, he would replace it with a new one from the bag. Zachary inched closer and closer to the man until the man finally winked at us and handed Zachary a comic, asking "You like comics? What do you think of this one?" As he finished up and headed  back into the back of the office, I commented to Mike that he seemed nice, to which he replied, "That's the doctor we're here to meet." I was fairly astonished that he would take on such a "menial" task himself, but it also spoke volumes about the caliber of person we were about to entrust our child's brain to.

We were called back to meet with the doctor and found all of the questions we didn't know we had about hydrocephalus and shunt placement surgery answered. The doctor was calm and eased our minds somewhat by telling us that he was very pleased to see our son's head was measuring quite large for his gestational age. That meant that his ventricles were growing but it also meant his brain was growing too. He said it was worrisome for a baby in utero to have a gestationally age appropriate head size when they had a hydrocephalus diagnosis because it meant the ventricles were growing into the areas the brain was meant to grow in. It was more indicative of major brain damage. 

We learned our son would have brain surgery on his first or second day of life. We learned that a shunt would be placed in his ventricles, run under his skin along his ear, down through his chest, and then end up floating in his abdominal cavity where it would drain the cerebral spinal fluid (CSF) that was currently not draining from his ventricles. A small incision would be made in his head, he may have an incision behind his ear, and another small incision would be made in his stomach. As long as there were no complications, he would likely be in the NICU for 7 days then home to our arms. We learned the percentages of infection from the surgery, the chance of mechanical malfunction of the shunt, and that the only thing our physician didn't recommend with a shunt was scuba and sky diving, though he had had patients who had done both and been fine. 

The surgeon agreed with our high risk doctor's decision to perform the c-section at week 37. He said once we had the c-section date, call his office and let them know and they would book the OR for the next day for the shunt placement surgery. We left the appointment still worried about what our child's future held but more confident that it wasn't totally grim. 

Fetal Echocardiogram

We dropped Zachary off at his former daycare, having been told that the fetal echocardiogram appointment could take upwards of two hours. While Zachary had been a good sport so far at all ultrasounds and doctor appointments, we were realistic about the limits of a three year old. Our old daycare was thrilled to have him for the morning, and were nice enough to not even charge us for his care.

Off to the high risk OB we went, nervous about what the echocardiogram may show. We had absorbed the reality of the hydrocephalus and the ramifications of what may come to be with that, but the thought that we may also be looking at potential heart issues, or more genetic issues was terrifying. We didn't know what we were up against. This is probably one of the most frustrating parts of an in utero hydrocephalus diagnosis. Until the baby is born, there is no way to know the level of brain damage you're looking at - from none to major.

A fetal echocardiogram is an ultrasound that looks very closely at the heart, measuring the important areas and watching the blood move through. It is pretty boring to watch (at least from my point of view) because I have no idea what I'm looking at most of the time anyway, and I really have no idea about the parts of the heart. Plus, it was incredibly long. They took a cursory look at the girl, proclaimed her perfect as usual and then moved onto our boy. His ventricles were measuring even larger at this point - around 20 mm. The good news was that his heart measured perfectly. All four chambers were perfect and the blood was moving very well.

At this appointment, the high risk doctor also told us that he was referring us to the pediatric neurosurgeon. He wanted us to have a prenatal appointment with the neurosurgeon so that we could learn about the shunt placement procedure and ask him any questions that we had - since he was the expert. Our high risk OB, while not new to the field, was new to the area and had researched the neurosurgeon and proclaimed him to be among the best he had ever worked with. The neurosurgeon had apparently placed shunts in infants as early as 27 weeks gestation (pre-maturely born of course). The OB office let us know that they would refer us to the neurosurgeon and we should expect a call to set up an appointment.

Worry

As I began researching hydrocephalus more, I became increasingly worried about the diagnosis. Everything I read showed that the prognosis for an individual diagnosed with hydrocephalus could range from fantastic to grim. That it was not unheard of for someone to live a full and happy life with hydrocephalus, and just as likely that major brain damage could occur in utero and an individual could have difficulty with motor skills and could experience from mild to severe mental retardation.

While I knew that no matter what the outcome was I would love my child unconditionally, it took some time to get used to. This wasn't the story I had written for myself and I was terrified. What surprised me even more was that I was so worried that this diagnosis would lead to a more difficult life for my son. Even though it's cliché to say, every parent truly wishes for a better life for their child than they've led themselves. I just wanted my son to live a worry-free and uncomplicated life. This wish suddenly seemed to potentially be threatened.

What my worry motivated me to do was get involved and learn. I sought out the Hydrocephalus Association and started researching on their website. I looked up the local chapter of the Association and followed their Facebook page. I joined an online forum for parents of children with hydrocephalus and I started researching on medical websites about the disorder. If my child had to live with this, the best thing I could do for him as his parent is to be prepared to help him overcome any obstacles that might stand in his way.

Genetic Counseling

Based on what my high risk OB saw on the ultrasound, he suggested that Mike and I meet with a genetic counselor to discuss what possible ramifications of an issue may be. I informed my high risk OB that we had no intentions of terminating the pregnancy no matter what results we found and he said he understood but a genetic counselor could still help us. We scheduled the appointment for about a week after the MRI and found ourselves sitting in a comfortable office. Zachary had toys to play with on the floor while we sat on a couch discussing what could be.

The genetic counselor was the first person to actually confirm to us that our son had a hydrocephalus diagnosis. The official measurements from the fetal MRI showed the ventricles measuring in "official hydrocephaly diagnosis range." The ventricles were measuring at approximately 14 millimeters. Anything above 12 is considered hydrocephalus. What was more concerning than the fact that the ventricles were now measuring in hydrocephalus range is that the rate of growth seemed fairly high. We had initially had measurements of 9.5 mm at Dr. Amnio's office, a month later had measurements at 10 mm and now two weeks later on MRI of 14 mm.

I started crying when I heard the official diagnosis. You're told not to Google. You're told don't look up the worst case scenarios. You're told that each case is a different story. You Google anyway. You research every prognosis from grim to miraculous. You look up support in your community. You look up previous cases. I had never even heard of hydrocephalus until our son was diagnosed with it. I had no clue (though it is among one of the most frequently diagnosed disorders prenatally) that it even existed. And now, I had to learn. I owed it to my child to be armed with the most accurate and beneficial information available.

The genetic counselor touched on the idea of completing an amniocentesis to determine if the cause of the hydrocephalus was genetic, but when she found out that we would not consider termination of the pregnancy, she advised against the amio. She said that the risk would outweigh anything we could learn - the information the amnio would show would be available via blood test after birth.

We left the office that day in a bit of shock, armed with information from CHOP (Children's Hospital of Philadelphia) on hydrocephalus and an appointment for a fetal echocardiogram. Since hydrocephalus can be genetic, the high risk OB wanted to complete the fetal echo just to be sure that there were no major heart defects that we needed to be aware of.