Saturday, June 30, 2012

And I'm free!

Today I was released from the Hotel Swedish. Although this was a little bittersweet as I can't just wander down the hall to see sweet Maisie whenever I like, I was thrilled to see my little man James for the first time since delivery four days ago.

I had hoped to be here on bed rest into August but the little dragons had other plans. I'm trying not to feel guilty about that - but apparently I'm hormonal and not in control. Today I had a meltdown over underwear and locked myself in the bathroom. I figured it was safe to come out when I realized I had been behaving like a 5 year old in self-induced time out. I am lucky my family puts up with me.

The year of 2012 has definitely been a tough one on my family and I. I've been out of sorts pretty much the whole time, and they've been taking care of me in every sense of the word. I've had two major gastrointestinal illnesses (thanks Celiac and Norovirus) along with the typical pregnancy stuff. I was on moderate restriction and stopped driving at 12 weeks, strict bed rest from 17 weeks, and hospital bed rest at 26 weeks. When I get back into the real world, I will likely need several kinds of therapy.

In this time I've had personal chefs (Jimmy, Mom, Mommy Kathy, Jim, Aunt Joanna, Michelle, Aunt Debbie, Ashley, and more), personal housekeepers (Jimmy, Mom, Erica - she even scrubbed my shower with vodka - hugs to her!), personal groundskeepers (Jimmy, Mom, Dad, baby Giblet), maintenance guys (Dad, Jimmy), babysitters (Michelle, Mommy Kathy, Victoria, Erica), locksmiths (Dave x2), chauffeurs and valets (Mom, Jimmy, and countless guys at Swedish hospital), and entertainment providers (Janet, Brian, Debbie, David, Rachel, Erica, Michelle, the Finches, Victoria, Emily, Angie, Joe, Bullet Inc, and the rest of our friends and family). I should also mention our employers - Jimmy and I work for the most amazing people who have helped us on this crazy journey and have not fired us yet *knock on wood*. Their flexibility, empathy, and willingness to help out these little dragons will not be forgotten.

Today is the beginning of the rest of 2012. I'm going to focus on healing from major abdominal surgery, the craziest pregnancy filled with stress / bed rest / muscle atrophy, and two amazing little dragons that didn't quite give me stretch marks or twin skin. And I'm going to try to keep it together and not go crazy Mommy Dragon on people. I might throw our cell phones off of a building if it weren't the only way the NICU's could get ahold of us.

Thanks to everyone who got us here. We could not have done it without you.

Meeting James

First of all, he is so handsome. Maybe I'm just biased because I'm his mother, but I really do think James is amazing. Secondly, he reminds me of my Dad. To me, that's not a huge surprise because he's a fighter too who has overcome many odds. James is named for three very important people in our lives, all of whom are extremely brave and strong.

James is off the billi lights and so we were able to get a better view of his face. When he was born, his hair looked darker. Now his hair looks more reddish - he is definitely taking after me right now. Things can change so quickly in a matter of days with these babies. James now has an IV in his head (ouch!) but the nurses insist it doesn't hurt. Let me put an IV in your forehead and we'll see how that feels....

It's hard not to compare your two kids going through the NICU - they both have different challenges. We are so proud of James and everything he has overcome. It will definitely be a long road, but we have each other.

Thursday, June 28, 2012

Babies and billi lights

Today the babies are both on billirubin lights to help improve jaundice. This is a common practice in preemies. Sometimes blue lights are used, but in our case they are white.

Maisie is doing well and scheduled to be off the ventilator soon. She met her Grandma Kathy today.
Grandma sees Maisie for the first time

Maisie sunbathing in the billi lights

James' echocardiogram showed his heart is in full working order! The doctors were shocked (we weren't too surprised - it is James). Though still operating with the fetal system associated with pulmonary hypertension or PPHN, this will hopefully resolve in a few weeks. He has a minor PDA that they are watching also (an artery that should close within a couple weeks of birth between the heart and lungs). James met his Grandpa Jim today.

Wednesday, June 27, 2012

Holding Maisie

The NICU at Swedish is an amazing place. The people are so calm and friendly, and they have private rooms where you can have up to four visitors at any given time. It's a stark comparison to PSL, which runs a much tighter ship (with much closer quarters).

Maisie and James were assigned a twin room and although James has been transferred, they are holding her here so when he returns they can be together. This was very important for us. We have a couch, two reclining chairs, and a lot of room to spread out. Maisie is in an isolette, which is much like being on her own private island. It is very warm and humid to recreate the womb environment as much as possible.

Today we got to hold Maisie for the first time. Our amazing nurse, UK Deb was an angel and bundled her up wires and all so we could have this opportunity. She was still on the ventilator but on 21% oxygen, which is room air. They tell us she will probably go to the CPAP very soon.

Maisie looked like a full term baby and not a 1lb11oz micropreemie with the bundle of blankets all around her. Still, we will never forget these first 10 minutes that we were able to hold our daughter. The nurses commented that we looked tired, and we definitely felt it; but there was nothing we could do but keep forging ahead.

The first night & morning

While I was in recovery, Jimmy was down in the NICU with the babies. Both babies were intubated and put on ventilators due to their premature lungs. They had umbilical and central lines put in to monitor vital signs and draw blood. Measurements were taken, and teams of three to four nurses worked with each baby to stabilize them. A neonatologist was on staff, along with respiratory therapists and more. Jimmy sat on the couch of the twin's NICU room as all of this was going on. He signed the neccesary hospital paperwork and watched nervously as progress was made on each baby. Jimmy headed back to the Recovery Room to check in on me and went to take care of our belongings.

Once we were settled in our Family Care room, Jimmy's family arrived and we had a quick reunion with Jimmy and my Mom. Within minutes, our visit was interrupted by the neonatologist who asked for a private audience with Jimmy and I.

She asked for permission to transfer James immediately to Presbyterian St. Luke's for nitric oxide treatment and high frequency ventilation. The team at Swedish was having trouble ventilating James due to the condition of his lungs. We agreed. After the doctor left, Jimmy went to the hallway and told our families that we were going to call it a night. We knew that they had heard the news, or perhaps part of it so Jimmy told a brief version and we all parted ways. He headed down to the NICU to see James off.

The mood in the Twin's room was conflicted. On the left, Maisie was being cared for but it was certainly not frenetic. On the right, several people were frantically trying to stabilize James. It was controlled chaos. The nurses and staff on duty would communicate but quiet enough so Jimmy would not hear exactly what was being said about his son's condition. Paperwork was signed as the AirLife Neonatal Transport Team arrived to begin the transfer of James to the other hospital.

Jimmy watched as James was loaded into the incubator on the stretcher, which had a canister of nitric oxide available during the ride. The time was just after midnight on June 27th, and James would arrive via AirLife ambulance to PSL within the hour. Jimmy said he had never felt so deflated or helpless and wandered the halls aimlessly for a while until returning to the Family Care room with me.

We learned later that they did not expect James to survive the transport or the first night.

At 1:30am, Jimmy received a call on my cell phone from Dr "Hawkeye" H confirming that James had arrived to PSL and that he was stable but on a lot of support with the jet ventilator and nitric oxide. On such high a setting, there was a risk of damaging or putting a hole in the lung. Dr. Hawkeye promised to do what he could, and said that the next 48 hours would be crucial to James' outcome. He said, "no news is good news - try and get some sleep."

For various reasons, we were too keyed up to sleep. We were both terrified about the babies, and still dealing with the rush of emotions and adrenaline associated with the previous day's events. I didn't know a lot of the details relating to James and his transport, and Jimmy was quiet for most of the night. He was on the extra hospital bed next to me, phone in hand, staring at the ceiling - but never sleeping. Sleep was slow to come when the nurses come in to do post-op checks starting every 15 minutes throughout the night as well. It gradually got more infrequent, but unfortunately it was a very long night with everything going on. More than anything, we were terrified to get a phone call.

Around 7am, Jimmy decided to head down to PSL to see James. He went by himself - he was exhausted, delirious and hadn't eaten in over 24 hours. It took a while to find parking and the NICU. When Jimmy reached James, he was intubated and attached to a jet ventilator running at 420 breaths per minute. James' little chest fluttered under the high frequency, and to keep him from breathing over the machine he was sedated to a point of stillness with Fentanyl. He met with Dr Hawkeye and the nurse, and worked on keeping himself together given the extenuating circumstances. Jimmy was able to hold James' hand and speak to him a long time about many things. After a while, fighting the urge to sleep at his son's bedside, Jimmy started to break down and decided it was time to leave.

Meanwhile, I was getting the pit crew treatment from the post-op nurses in the Family Care unit. Although not the most comfortable, I was able to get in a wheelchair and get down to see Maisie before lunchtime. On the way back, I called Jimmy, who said he was not doing well. He said he was headed home for a shower and a change of clothes. He also wasn't able to give me information on James, but said we would talk when he returned to the hospital.

Being that I was hormonal, I was becoming increasingly frustrated with the lack of information about James' condition. When I returned to my room, I was so worried about both of them. I had such a terrible feeling. When nurse-midwife Kris arrived soon thereafter, together we called down to PSL to get an update.

I spoke with the doctor who would be assigned to James, Dr K. She gave me a very full depiction of the challenges we were facing from a medical standpoint, and though I was not thoroughly familiar with some of the concepts I wasn't worried. This was our son, who survived what seemed impossible. First, James' lungs were more developed than anticipated but were stiff, thus the nitric oxide treatment to help loosen the blood vessels and essentially the lungs. He was on experimentally high levels of 40% NO. James had pulmonary hypertension, where the blood pressure in the lungs was high and the fetal circulatory system had not quite switched over. The right side of James' heart was not functioning. His brain ultrasound looked clean at that moment, but that could change. He had no joint contractures or musculoskeletal issues they could identify from him being constricted in the womb for 15 weeks. He was on a lot of support and was very sick; more tests would be done tomorrow.

Jimmy returned to Swedish at the end of the phone call. What they call the "NICU Roller coaster" had officially begun. Mom, who was with us went to Jimmy and gave him a big hug. She gave him very stiff instructions: "F$@& 'em!"

We all laughed; I cried a bit because of pain in my incision and abdomen from laughing (it would be a trend for the next few weeks thanks to endless torture from our family), and we all agreed that these doctors definitely don't know what our kids are capable of. We were bound and determined to prove them wrong.

Maisie - 1lb11oz, 13.25 inches long
James - 1lb11oz, 13.25 inches long
Respiratory Therapists work on James, who is in a bag for warmth

AirLife Neonatal Transport Team prepares to take James to Presbyterian St. Luke's for nitric oxide treatment

Tuesday, June 26, 2012

The journey begins

Today was the day that the babies were coming. They had decided, and I had been in labor since the night before. Unfortunately, I was having a hard time getting the nurses and doctor to believe me. I had been at Swedish Hospital on bed rest for a week, and was exactly 27 weeks pregnant with the twins.

By the morning of the 26th, I had been in labor for 8 hours and given Tylenol for pain and Ambien to help me sleep. Neither worked. I was being constantly monitored but the machines were not picking up the severity of my contractions, most likely due to back labor. When the parade of phlebotomists, nurses, doctors, nutritionists, social workers, food services people and more started streaming into my room beginning at 6am I was already an emotional wreck. I could barely hold myself together.

Something was definitely wrong - I felt like I had little dragons breathing fire in my spine.

My doctor (who was normally pretty on-the-ball) informed me I was having twins and that my pain was due to having twins and a growing uterus. I wanted to strangle him. Nurses chalked up my cramping to the placental abruption I was still dealing with, but they were wrong. My mom arrived, started asking questions and called Jimmy to come down to the hospital urgently. She knew what was happening, but it was a bigger problem trying to convince the nurses that I was in labor.

On March 14th, at 12 weeks pregnant I was rear-ended in a minor motor vehicle accident. We had barely told anyone we were expecting the twins. Although I was shaken up, nothing seemed out of sorts and I made my way to work. Three hours later, my water broke.

I met Jimmy at our Perinatologist's office that afternoon. Luckily we had already been seen by Dr. H, who specialized in high-risk pregnancies, two weeks prior. We did a "peace of mind" ultrasound with our Nurse-Midwife Kris, and she was having difficulty seeing Baby B on the small monitor. They took us quickly into the large ultrasound room for a closer look. It was evident that something was wrong - Kris mentioned that there was no fluid around Baby B. I kept telling her my story about the accident and the "gush" that I had experienced earlier but it seemed like they just couldn't believe it.

Dr. H came in and did a quick look on ultrasound. He confirmed the findings, saying that it "doesn't look good for Baby B". We asked what to do, and he said that we "watch and wait." We agreed.

They sent us home with strict instructions to keep an eye out for infection, take frequent temperatures, and further measures. Otherwise, we would watch and wait. It was explained that we could have had kidney dysfunction causing the lack of water, or it could have been Premature Preterm Rupture of Membranes or pProm. We wouldn't know for sure until 16 weeks, when pProm was confirmed.

pProm (Premature Preterm Rupture of Membranes) occurs in the second trimester in less than .4% of pregnancies. There is no data for the first trimester, which is when our rupture took place. Forty percent of pProm pregnancies deliver within the first week of rupture, and 30% remain pregnant after five weeks. Survival rates diminish the earlier the rupture occur; maternal and neonatal risks are severe. If the baby does survive to delivery, the lack of amniotic fluid causes many problems, including severely impaired lung development that would prohibit survival outside the womb. There were other issues, like joint contractures, that were entirely treatable - but because of pProm the chances of your baby being born with tiny or non-existent lungs are very great.

Our doctor, who has been practicing high risk Perinatology for over 25 years, had never seen or heard of a case like ours.

From March 14th to June 26th, we remained pregnant for 15 weeks. We had survived 104 days from pProm and several bouts of placental abruption related to it. I was on bed rest for 10 weeks, 9 of which were spent on the couch at home watched closely by Jimmy and my Mom. We had a whole community to thank for making it this far: family and friends for food and company, flexible work environments, people all over the world sending thoughts and prayers, and more. Finally, our pregnancy was coming to an end and we were about to see just how accurate the statistics about pProm were going to be.

The nurses finally started to get the idea that I might be in labor and might have an infection in the afternoon. With pProm, infection is the biggest risk to Mom and babies. When some lab work came back suspect, I was whisked away for an ultrasound and an amniocentesis. We didn't have time to process what was about to happen. Once settled in the office, I signed a consent as they prepared for the amnio. Dr. H came over with a very large needle and told me to be very still. He withdrew a sample from a very small pocket of Baby B's fluid while we watched baby wriggling around. I held my breath and hoped that we both did not move. The fluid, when collected, was merlot colored and it was not known if the sample would provide the results needed to show whether an infection was present. It was obvious that the abruption was still affecting Baby B.

Following the ultrasound we went back to the room. Nurse Kris came quickly after and asked if she could do a physical check to see dilation. With pProm patients, this is always avoided due to risk of infection. I agreed, and we all took bets on the results. Kris ended up winning - I was 4-5 cm dilated and fully effaced. "You're having these babies tonight," she said.

Things moved into motion for delivery, though the method had still not been determined. The on-call doctor, Dr L, was on his way in. I was on IV antibiotics and magnesium sulfate to promote brain development for the babies. As soon as the doctor arrived, we discussed our concerns and a cesarean was decided - we planned on 8:30pm.

Jimmy and I were nervous and excited, but terrified. We were not yet certain how things would turn out. We went to the Operating Room at 8:30pm and I got the epidural. Things moved quickly forward then; the room was filled with so many nurses and staff ready to assist the babies that it was overwhelming. Within minutes, the babies were out.

8:54pm: Maisie Angeline (Baby A) was born, and she cried gently. Her apgars were 5 & 7.
8:55pm: James Douglas (Baby B) was born, and he came out screaming. His apgars were 7 & 8.
The neonatal teams worked fervently on them while Dr. L was finishing up. Jimmy went to see them and left with Maisie. When James was ready to leave for the NICU, he was rolled over to my side. He winked at me, and was whisked away.