Dad's initial perspective

I want to start by saying my posts will likely contain no more eloquence than Cathy's, though I'm flattered she thinks her husband is such a great writer. When she said "I think I want to blog about what's going on", I supported the idea for a few reasons: 1) I feel like it's going to provide a diversion for her during bedrest 2) I think it's good to let friends and family know what we're experiencing and how we're feeling and 3) Maybe someone reading about us will find something helpful.

I had been writing privately about my feelings since the ultrasound at 23 weeks when we found out something was wrong. Here's a summary of what I've written up to now:

September 7th - 23 and 1/7 weeks
Though it's too early to tell right now, today could be one of the saddest days of our lives coupled with a life changing day. During a routine ultrasound of the twins, the sonographer spent far more time looking at Owen's head than usual. She went out and came back in with Dr. Pauli who confirmed our worst fears. She was matter of fact, but compassionate as well. "There's a finding on twin A, and it's serious." She then went through some of the images with us. There was a large "echo dense" region in Owen's brain signifying old blood. Nothing at all of this nature and certainly not this magnitude was apparent on the last ultrasound three weeks ago. Even though we are both healthcare professionals, that gave us no protection or added insight. At that moment, we were just two expectant parents who were being told that one of our babies will have major brain damage if he survives at all.

One of Cathy's main concerns is how to tell Allison, our 4 year old. I really think kids see limitations and differences far better than we do. We were waiting at the lab for our blood draw, and I pointed out how a little black kid had started playing peek a boo with another little white boy, about his same age, but breathing through a tracheostomy and in a stroller accompanied by his ventilator. Neither of them took any notice of how the other was different. I know that's how our kids will treat Owen.

September 10th - 23 and 4/7 weeks
I worked 12 hour days Saturday and Sunday, which was somewhat helpful because I was able to take my mind off the situation for a while. But then invariably I would encounter someone else in the hospital who had just found out we were expecting and ask lots of questions and be congratulatory. We've limited who we've told about the ultrasound so far; Cathy told her residency coordinator, a friend/fellow resident, and today plans to tell her chair and fellowship director. The only person I've told is my mom, who has informed my dad, brother, grandma, and aunt.

Because the girls' behavior lately has been off the charts, I asked my mother to come stay the weekend and help Cathy control them. I think the girls enjoyed it. They got to spend more time outside then they probably would have, and they went to Hershey Gardens to see a butterfly exhibit. I’m told that though my mom did witness a few of their classic meltdowns, they were well behaved mostly. Emma peed on the potty a total of 5 times in two days - a new record for her. I think the primary motivator is that she gets a Dum Dum lollipop every time she goes.
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I had bought this book awhile ago, before Cathy got pregnant, but never had the chance to read it and then once we found out she was expecting, I thought it might be bad mojo so I just put it aside. It’s called “Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU” and the author was an OB-GYN resident when his third child was born unexpectedly at 26 weeks. I decided to start reading it today, and found this passage that sums up pretty well how I feel right now: “Knowledgeable enough to understand that disaster was unfolding but lacking the skills or standing to do anything about it...”

September 12th - 23 and 6/7 weeks
Well, today is my 31st birthday. Spent it getting Emma up & ready for school, and then at an appointment for pediatric neurology. The pediatric neurologist will basically be involved with following Owen’s neurodevelopmental progress and any issues along the way including CP or seizures.

Ben Folds’ birthday is also September 12, which led me to listen to the song “Gracie” about his daughter. “You can’t fool me, I saw you when you came out. You’ve got your mama’s taste but you’ve got my mouth. You will always have a part of me nobody else is ever gonna see, Gracie girl...Life flies by in seconds. You’re not a baby Gracie, you’re my friend. You’ll be a lady soon but until then you gotta do what I say. You nodded off in my arms watching TV. I won’t move you an inch even though my arm’s asleep. One day you’re gonna wanna go hope we taught you everything you need to know, Gracie girl. You will always have a part of me nobody else is every gonna see but you and me, my little girl, my Gracie girl.” Reminds me a lot of Emma & Allison and my very different love for both of them, and the love that I will have for Olivia and her brother Owen.

September 15th - 24 and 2/7 weeks
Well, yesterday we had the fetal MRI. I wasn’t even aware Hershey did fetal MRI, but apparently they do 4-5 per month. The purpose of the fetal MRI was to differentiate the mass - hemorrhage vs. tumor. You don’t have to be a radiologist or even a medical professional to realize that these terms in any kind of radiology report are not good: “Tenacious...large...expansile...aggressive... significant.” So Owen has a brain tumor, and its growth, like many tumors, is exponential. It is likely a teratoma, but the type of tumor is irrelevant at this point. There are no words...

September 23 - 25 and 3/7 weeks
Not much has changed in a week. A few other people have learned of our situation and I'm thankful for that right now. It's hard to keep things bottled inside. Cathy is so tired and in so much pain I try to do as much as possible at home in terms of preparing meals & cleaning, but unfortunately this was my weekend to work so she spent two very long days alone with Alli & Emma. Our next OB appointment is October 4, and we meet neonatology and neurosurgery on the same day.

The worst day of my life...

At our 23 week ultrasound there was an “abnormality” noted. Dr. Pauli was reading that day and came in and tried her best to explain an incredibly difficult situation to explain. Baby A, our little boy appeared to have a mass in his brain. They couldn’t tell for sure exactly what it was. It had multiple densities on the ultrasound and appeared somewhat cystic.  Their best guess was blood. They thought he had an intraventricular hemorrhage at some point over the past 3 weeks. I had no trauma so it made a bleed rare, but possible. They also introduced the idea of something called neonatal alloimmune thrombocytopenia which is basically my body making antibodies against the baby’s platelets. Again extremely rare especially since baby B was perfectly fine. Although with the research I did with the babies being fraternal it is possible just again ridiculously rare. They also introduced the idea of tumor, however felt it was less likely as it was large and typically tumors do not grow that quickly. They scheduled me for a fetal MRI(I had never heard of this prior) on 9/14/12.

I am a doctor… this means I deal with pretty much everything differently than lay people when it comes to anything medical. I looked at the pictures, I knew it wasn’t good but being a neurologist I knew that early injury can still do well. It was big, took up most of the right side of his brain and pushed some onto the left. His head was measuring big, 26 weeks instead of the 23 it should have been.  There wasn’t any definite hydrocephalus at that point but I felt like I couldn’t let myself be optimistic at that time. I wanted to, wanted to hope and believe that everything would just go away in the week prior to the MRI, but I see the worst of the worst. Most physicians you meet are pessimists, I am no exception.  I was pretty much in a daze through the next week. Managed to celebrate Josh’s birthday with a smile, although it was definitely forced. I know I went to work, didn’t kill anyone and managed to make it to Friday the 14^th. I can’t tell you how many prayers I said for strength and peace for that week but I will be completely honest. I was angry. I know why something like this would happen to us. We love our children and would do anything for them.  Then I prayed that God would heal him, that everything would be fine when I went for them MRI. I tried to tell myself he isn’t going to give me something I can’t handle. I wasn’t sure I could handle something like this though.

The MRI was at 10:30am. We talked with Dr. Hulse, a pediatric radiologist who explained the procedure and what they would be looking for. He said that they would do 3 scans on each baby to evaluate everything they could while they had me in the scanner. He estimated it to take approximately 30 min. Anyone who has had an MRI knows how uncomfortable those MRI beds are. I must say, they are much more uncomfortable to someone with a gravid uterus with two babies compressing your major vessels taking blood back to your lungs. They did many more than 6 scans, I assumed it was because they were moving. As I was  on the table for almost an hour I assumed the worst.

I walked out and Dr. Hulse asked me if I wanted to go over the pictures with him. I of course did, who would give up the opportunity to discuss with the person who knows the most about these type of scans. He pulled up the first one of baby A and I knew it was bad. He scrolled through sagittal and axial cuts of the MRI and showed me all the aspects of what we were looking at. It definitely was not a bleed. I could tell that immediately and didn’t need him to explain that. It was bigger than on the ultrasound a week prior and had more involvement of the left side. It appeared to be a tumor. Massive and very highly aggressive to have grown this large in only a month. Looked like it originated from the third ventricle but he could not be certain. He said that the most likely tumor that appeared like this was a malignant teratoma. The other option he mentioned was a glioblastoma. Neither one was better than the other.

We had a meeting with the pediatric neurologist right after our MRI. She is a dear woman. Someone I greatly look up to and was glad she was the one we would be seeing. She walked into the room and knew we knew. Unfortunately she had nothing to offer us. She had sent a message to the pediatric neurosurgeons but with how everything looked no one thought that there would be a neonatal surgeon out there that would touch him. The tumor was too big, too aggressive. I left stunned, devastated and unsure of how to process this information.

We then went directly to a meeting with our MFM  doctor. He went over the process we would likely be going through over the next few weeks. Right now it would be a waiting game. Frequent ultrasounds to follow head size and make sure he was still functioning. If he were to develop hydrops or polyhydramios then he could put his sister at risk and we would be talking about urgent delivery. Right now he looked like he was still doing everything he needed to do. Baby girl looked great. MRI showed every part of her looked perfect and she was still growing well despite him having a big head.

Mark 9/14/12 as the new worst day of my life.

I still didn’t know how to process this information. I was completely devastated. Our little boy was just given a death sentence and I could do nothing about it. I am supposed to be the person that fixes these things, not the one that has to personally deal with them. I had several breakdowns, although I tried to keep them to myself as best as possible, as I still hadn’t figured out how to even approach this with Allison and Emma. I had a thousand things going through my mind. How long do we think they will stay in before we deliver? No idea, take it one week at a time. How do you contemplate losing a child before you have ever even met them? Still haven’t come up with an answer to this one. Do we need to start planning funeral services now? Still haven’t delved into that one… besides picking out some music I would like to use. Will I be able to hold him even though we know I will be having a c-section? We meet with neonatology next week but they apparently deal with this sort of situation frequently and we will have as much time as possible with him after delivery. One of my coping techniques I guess was to research the tumor he has. Incidence is approximately 0.3/1 million births. One of the most rare things you can see. Of the very few babies born with a malignant teratoma 97% pass away within 1 week of delivery. 30% of those are stillborn. The later they are diagnosed the better chance they have at survival but the survival rate is still only 3%. It is almost unheard of to find one as early as we found Owen’s. Typical diagnosis happens between 28-34 weeks. Hydrocephalus is inevitable as it is a 3^rd ventricle tumor and will most definitely block CSF flow. We have to hope his head doesn’t get too big too fast so we can give Olivia as much time as possible prior to delivery. I sort of stopped with research there. It was not comforting.

I still occasionally get angry about dealing with this, but am trying my best to at least stay optimistic for certain things. I pray he is born alive and I can spend at least a few minutes with him. I pray he stays healthy enough to keep his sister in long enough to where she has an uncomplicated NICU stay. I specifically pray several times a day for strength and peace. To know we were blessed with Owen for a reason and someday I will know why.

Right how his head is big… really big and it has made my uterus very irritable. I am basically on bed rest from here until delivery so I thought it would be a good time to start letting people know what we are experiencing.  Both Owen and Olivia are very active and are good at keeping me up at night. I feel blessed to feel them inside of me.

We have another appointment and ultrasound next week when we hit 27 weeks. Pray that everything continues to look stable at that time.

Cathy

Our Journey from the beginnng...

Bear with me… I am not a writer by any means. Josh’s entries will most likely sound much more eloquent than mine, but I think this will be a means for us to share our story and relieve some bottled emotions.

Our journey started back in April of 2012. As many know Josh posted an April fool’s joke saying we were expecting twins. I’m not entirely sure how many comments there were about karma. At the end of April we found out we were expecting again. We knew we wanted another baby and were excited that it happened so easily. At 6 weeks pregnant I started having severe left lower quadrant pain. Being a doctor and always expecting the worst I assumed I must have an ectopic pregnancy. I made a couple of phone calls, called in a favor and had an appointment to have a quick ultrasound that afternoon (instead of going to the ED… which I avoid at all costs.) I happened to be seen by the chair of the department for OB/GYN at the hospital, who is amazing I must add, and as she was doing the ultrasound she had the screen pointed towards her. All she said was… huh, that’s not what I expected. That of course freaked me out and she spun the screen around for me to see. She asked me what I saw… All I could think then was seriously I am in this position, afraid of the worst and you are pimping me? Really? Then I looked and it was grossly obvious that there were two sacs… both intrauterine. We found a heartbeat on one and a good looking yolk sac on the second. She was very optimistic at that time and had us follow up for another visit in two week with an in office ultrasound at that time as well.

Our appointment two weeks later was with another of my favorite physicians, Dr. Jaimey Pauli. She was an MFM fellow and delivered Emma. She was just finishing her fellowship at the time of our appointment and was staying on as an MFM attending. She did the usual workup for our first visit and did a quick ultrasound. We saw both babies heartbeats at that appointment but one was measuring significantly smaller than the other so we were sent for a higher level ultrasound at the MFM office the next week.

The next ultrasound was much more reassuring. Everything looked good at that time. Babies were measuring just a couple days apart which is totally normal and they looked like di-di twins (diamniotic, dichorionic) or fraternal. This was a huge relief for me as I knew we would not need to worry about twin to twin transfusion syndrome. At that point because of my history of preterm delivery of both Allison and Emma we transferred care to maternal fetal medicine and started seeing them every 3 weeks.

The next several weeks were pretty similar to my previous pregnancies. Horrible nausea and vomiting, feeling ridiculously tired and still trying my best to get through the last couple months of residency. I do feel like I started showing earlier with this pregnancy (I blame it on the fact that there were 2, it may have just been bloating.) I also got over my nausea at about 16 weeks which was completely new for me. My pregnancies with both the girls I was puking until the day I delivered so I felt very blessed and had this gut feeling that at least one of these kiddos was a boy.

We introduced the idea of new brothers or sisters to the girls. Emma wasn’t terribly interested at that point but Allison was so excited. She told me we were going to have a girl and a boy and was completely set on this from the beginning.

After several reassuring ultrasounds we felt safe to start telling people of our amazing news. I knew twins would be difficult but knew we could always have family and friends we could turn to and could not help but be excited about the thought of having two babies.

We had our standard anatomy screening ultrasound at 20 weeks to the day. It was a great day. Both babies looked perfect. They both weighed in well and were growing right on track. We found out that we were expecting our first boy (baby A) and another little girl (baby B). I left that appointment feeling great and went out and bought our first little boy outfit that week. Because of my history of preterm labor and difficulty with Emma’s delivery they wanted to monitor me closely so we were brought back in 3 weeks for another ultrasound to monitor growth and for a follow up appointment. That appointment was 9/7/12 and probably ranked as one of the worst days of my life.