Warning!!! This is going to be a LONG story. But it deserves to be told before I forget any details. At some point soon I will write a summary of Aidan’s NICU stay and summarize how he has done in his first 2 years. If you have questions, please feel free to drop me an email.
October 1999: Brandon and I met at the gym. We were introduced by a mutual friend, and it was all over. We knew early that the other was “the one” and we were quickly talking about marriage. We had similar backgrounds and interests, and we loved every moment we spent together.
July 14, 2001: We were married in July 2001 in the Portland Rose Garden. We got married on Brandon’s 30th birthday. (I turned 30 6 days later on our honeymoon in Jamaica)
March 2002: Soon thereafter we bought our first home and settled into marriage. We took great pride in the ownership of our first house and spent a couple of great years there.
Summer 2004: A couple of years passed and we went on an amazing trip to Italy.
When we came back, we built our second home. This was definitely our dream home. We watched excitedly as all of the customizations we selected went in and the home was completed.
Fall/Winter 2004: We decided we were ready and excited to be parents so we decided we were going to start trying to get pregnant. I went to the OB I chose and had my preconception check-up, cut out caffeine, started eating even better, and got ready to get pregnant.
March 17, 2005: I had missed my period, and took a pregnancy test a few days before this that came out negative. I took one again first thing in the morning on 3/17/05. Three minutes later, I came out of the bathroom with the pregnancy test quivering in my shaking hand. We were pregnant!
We were both elated! We found out the baby was due around Thanksgiving of that year, November 23, 2005 to be exact.
Week 6: Pregnancy seemed to be going easily for me. I felt good, albeit tired, during the first few weeks. I took a nap pretty much everyday and relished in the thought of becoming parents. My skin was glowing and I felt wonderful. We started shopping for maternity clothes and planning the baby’s nursery.
Week 7: I woke up to minor bleeding and to be frank, I freaked out. I am so glad Brandon was home to calm me, sit me down, and call the doctor’s office for me. They had me come right in for an ultrasound and found everything to be mostly OK. By mostly I mean that they could see a subchorionic hemorrhage but it was something that happens relatively frequently as the placenta grows and attaches. What did worry them was the baby’s heartbeat. Only 90 beats per minute. An unfeeling nurse made an unfortunate comment at that time that we would schedule another ultrasound in a week to see if the heart-rate picked up but that I “shouldn’t count on this pregnancy.”
Ugh. Punch to the gut. I spent the next 9 days scouring for information on subchorionic hemorrhage and low fetal heart rate. It wasn’t all that encouraging.
Week 9: About 9 days later I returned for an ultrasound that I feared would confirm that this pregnancy would not continue. To the technician’s surprise, our little peanut was growing well and his heartbeat had picked up to almost 140 beats per minute. Further, it looked as if the hemorrhage had been reabsorbed. What amazing news! We were on top of the world!
Week 12: At 12 weeks we finally heard his heartbeat on the doppler and the doctor said I was measuring perfectly, gaining weight perfectly, and was having a “textbook” pregnancy. We started to scour baby name books and narrow the choices. We decided to adopt a couple of more kittens before the baby came to make our older kitty adapt and to have more pets for our baby to come. Here I am looking a little tired with the two new additions.
Week 16: I had a routine exam and the doctor did the blood draw for the quad screen. This measures 4 parameters which can be indicative of the need for further testing for some birth defects such as spina bifida and down’s syndrome. Honestly, I didn’t give this test much thought. Until a few days later when my doctor’s office called with the crushing results. The values of this test were coming back with a 1 in 40 chance the baby had spina bifida. The normal result is about 1 in 1000. They were going to refer me to a perinatologist the following week for a level 2 ultrasound to look for anomalies. I was panicked to say the least.
Week 17: At 17 weeks we went to the appointment. We met with the genetic counselor at the peri’s office before the ultrasound and felt well informed on what the test results mean and what answers we would and wouldn’t get in the ultrasound.
The tech began the ultrasound and Brandon and I were nervous as hell. I remember that I was crying because I was scared of what I was going to see/hear. The tech began to smile and I just knew that everything was OK. I asked him what he could tell me. I know that normally techs are not supposed to reveal what they are seeing and leave that to the doctor to discuss. But I think he saw how much agony we were in and said, “Your baby is doing great. Do you want to know the sex?” One of the biggest rollercoaster dips I have ever felt in my life. One moment worrying about the health/viability of our baby to hearing everything is normal and we could know the sex.
Of course we wanted to know! He pointed to the area with an arrow on the screen and said, “You are having a baby boy.” I looked at Brandon and we were both crying. We were looking at our son.
The doctor came in and talked to us about what the ultrasound was revealing. She told me he looked “beautiful” and that given what she was seeing she would estimate our risk of spina bifida at the normal rate of 1 in 2000. She didn’t feel we needed to get an amniocentesis and she would just have me back for another ultrasound in four weeks to make sure the baby was still growing well.
On the way home we decided on his name…Aidan Christopher. We were having a son. The relief and elation was amazing.
Week 18: We began to decorate Aidan’s room in the Finding Nemo Theme. It was the beginning of a wonderful few weeks for us. I started to feel Aidan move and Brandon felt him a couple of times. I was starting to wear maternity clothes and was loving being pregnant.
Week 19: We went to Florida to visit a dear friend and on that visit I felt my heart racing. My friend worked at Shriner’s Hospital so she suggested that we have a nurse take my blood pressure just to be sure. 135/80. On the high side. My blood pressure is usually 110/60. We called my doctor who told me to take it easy and that the heat and my increase in blood volume was probably doing it to me. Despite minor worries about this, we had a wonderful last childless vacation.
Week 21: We returned to the peri’s office for our repeat ultrasound to check Aidan’s size on our 4th anniversary. (stupid idea to choose that day, looking back on it) What began for us as just another chance to see the baby turned into a nightmare. The tech began measuring head circumference and then onto femur and humerus. He measured and remeasured these. My heart sank. There is no reason to remeasure the length of a bone so many times unless the finding is not good. He pulled the doctor into the room.
She measured and remeasured. Aidan’s head size was on track for his gestational age, but his femur and humerus length weren’t. He was measuring almost 3 weeks small. What did this mean we asked her. Maybe Down’s Syndrome was her answer but she couldn’t be sure. She suggested an amniocentesis to be sure. We had the rapid FISH test done so that we could have an answer on major anomalies in 24 hours. Another crushing blow. I went home and just lay in the fetal position on our bed. I was devastated. The next day we got the news…the amnio was 46XY. We were having a chromosomally normal boy!
So why the short limbs we wondered. The doctor said the placenta may be having issues or he could be getting ready to go into a growth spurt. We would keep our eye on it but she wasn’t overly concerned at this point.
Week 22: I relaxed a bit. I was still uneasy about the small measurements, but more relaxed given the amnio findings. We tried our best not to worry and I just tried to do my best to rest and grow the baby. We had our niece Morgan and nephew Gavin up to see us for the weekend to give my brother and his wife a break. I enjoyed myself so much with the kids, but didn’t feel great that weekend. I was very tired and had more heart-racing symptoms.
Week 23: On July 29 we went to our friends’ Clay and Linda’s wedding. I was starting to feel really good again. Brandon was a groomsman in the wedding and we had a wonderful time. The following pictures are the last I had taken of me before Aidan’s delivery on August 30.
The next day I went out on a long walk with my neighbor and when we were having breakfast, I noticed swelling in my hands. It got bad. I couldn’t remove my wedding ring or even my shoes. I had a horrible headache. I worried a bit and almost called the doctor, but the swelling went away after an hour or so and I decided just to mention it at my appointment the next day with my regular OB.
Week 24(August 1, 2005): At the appointment, the nurse asked me how I was doing. I relayed the swelling story. As she took my blood pressure, she got a worried look. She exited the room and returned in less than a minute with the OB. Not good, I thought. The OB asked me what I would do if she put me on bedrest today. Sucker-punch. Ouch. I told her I would do whatever she said. She relayed that my BP was 140/90…I was developing pregnancy induced hypertension or PIH. The good news was that there was no protein in my urine so I wasn’t preeclamptic. But she did tell me that at only 24 weeks gestation, seeing signs of PIH already was ominous. I was to go home, lay down except for going to the bathroom, and see the perinatologist the next morning.
The peri visit was not good news. Aidan definitely had IUGR or intrauterine growth restriction. Aidan’s growth was behind but holding its own—not falling further behind the pace we had seen 3 weeks prior. Most concerning outside of my blood pressure was somehow called diastolic flow in the umbilical cord. I was experiencing periodic episodes of absent diastolic flow in one of the umbilical arteries. If this became continuous or was present in both umbilical arteries, they would worry that Aidan needed to be delivered. Here are three pictures of this. The first is normal flow, the second absent diastolic flow, and the third reverse diastolic flow. Seeing the third is usually cause to consider fairly immediate delivery.
The good news was that home bedrest was working to bring my blood pressure down and that Aidan’s IUGR (intrauterine growth restriction) was asymmetric. His body was funneling most of the precious nutrients to his brain and letting his limbs fall behind in growth. This kind of IUGR is generally more promising for the baby’s overall outcome than symmetric IUGR.
I was to be at home, laying down unless I was taking a bath or going to the bathroom. I was to check my blood pressure at least 3 times a day and chart the results. Anything over 130/80 was a reason to call the doctor. This time was acutely painful for my husband. He felt helpless. He was relegated to watching his formerly active, unstoppable wife laying down trying desperately to grow his baby.
Week 26 (August 19, 2005): I made it 19 days on home bedrest before I got a high reading on an early evening blood pressure check. 150/96! How could this be? I had been fine a few hours ago. UGH. I called to Brandon in the other room and told him we needed to call the doctor. The peri on call (Dr. G—who would largely take over my case from this point on) told me to go straight to Labor and Delivery at the hospital. That he would call ahead and I needed fetal monitoring and tests. Maybe an overnight stay. Somewhere in my heart I knew I wouldn’t be coming back home until Aidan was born. I gave hugs to my cats and looked at my house…imprinting it in my mind.
We arrived at L & D and they strapped a fetal monitor on me. They drew bloodwork and monitored my blood pressure. Everything seemed to have settled down. But Dr. G was cautious. He wanted me kept at least overnight and he would be in to see me the next day. He entered the room the next day and had a very long conversation with me. We talked about all of the things he thought *might* be causing this and wrote up a lab slip with many different blood panels on it. He started me on a blood pressure med and ordered 24/7 fetal monitoring. I was not going to get to go home until the results were back.
August 20, 2005: The next day Dr. G entered the room with an almost dumbfounded look on his face. He asked me, “Is your chart right? You’ve never miscarried?” I told him yes, it was right, this was my first pregnancy. He handed me a sheet of paper and explained that I had tested positive for homozygous (2 copies) of the clotting gene MTHFR c677. Basically this was likely causing a clot in Aidan’s placenta and most women have a few miscarriages before this is discovered and treated in order to have a viable pregnancy. He could not believe I had made it to 26 weeks untreated.
He started me on heparin shots twice daily in the stomach to thin my blood. He also added a ton of protein and calories to my diet, 1.5 gallons of water per day, an IV, and oxygen via nasal canula. All of this to try to push as many nutrients as possible into Aidan and his damaged placenta. Our aim was to grow Aidan as much as possible, try to combat reverse diastolic flow, and make sure I didn’t get so sick that I might die.
Week 27: The hospitalization was difficult both physically and mentally. Having to lay down (mostly on my left side) was actually painful at times. It was hard to keep my mind from not focusing solely on the imminent danger of Aidan having a bad deceleration and needing to be delivered. Meanwhile, Brandon tried to continue working despite having to keep up the house and come be with me as much as possible. There were ultrasounds and biophysical profiles nearly every day to assess Aidan’s condition. Dr. G explained that we were playing a balancing act between getting Aidan more “womb time” and him becoming too distressed in there. He explained that at this gestation every day in the womb meant almost 2% additional survival. We kept a close eye on his cord diastolic flows, my amniotic fluid, my lab values (PIH labs), growth, etc. I was still strapped 24/7 to a fetal monitor. When Aidan would have a deceleration, a nurse would rush in, look at the strip and give me a bolus of IV fluid. He always recovered from these, but sometimes he seemed in a bit more distress.
We had no less than 4 instances where we almost went to c-section during my 11 days in the hospital. Each time, the doctor would come in, look at the strip, do an ultrasound and see that Aidan was doing well. We were going to let him cook some more.
During this time, it was hard for me to feel so vulnerable and like such a failure. I absolutely forbid pictures of me. Now, I wish I had. But that was my emotional state at the time…so be it. We met with a neonatologist who gave us encouraging, yet sobering statistics of preemie born around this gestational age. It was staggering to process what we might face. I became so good at pacing the sound of the fetal monitor in these days that I could hear a deceleration coming, and turn around to see it happening on the monitor. The continuous oxygen was making my nasal passages so dry that I had lots of bloody noses and nostrils full of sensitive scabs. Every muscle ached from weeks of bedrest. I felt like a stuffed pig because I was being so flooded with fluids, food, and protein that I had gained almost 20 pounds in those ten days. The good news was that Aidan’s ultrasounds were showing weight gain. Whatever we were doing was working. But how long was I going to be able to keep him in? Nobody had the answer to that question. Sleep didn’t come easily during those hospital days.
August 29, 2005: This was actually a good day. Aidan’s biophysical profile was great. He was practice breathing and my amniotic fluid level had come up a bit. Further, the dopplers on the cord blood flow showed a mildly positive diastolic flow. Dr. G (who had come in even on days off to see me for 10 days straight) said he was going to run my PIH labs (liver enzymes, etc) and if they looked good they we may even get to skip tomorrow’s ultrasound and give me a mental day off. He stopped back in at the end of the day and told me that my PIH labs looked a bit high, but about where they had been during the whole hospitalization. He told me that he was going to let another colleague in the Maternal Fetal Medicine practice take his calls that night, but that if something went wrong and I felt uneasy, I was to have the nurse call him.
Even though the day was relatively good, I was feeling uneasy. My stomach felt queasy and I asked Brandon to stay the night on the daybed in the room. Most nights I was having him go home so he could at least get some sleep.
Around 8pm I started feeling pain in my upper stomach. It felt a little like gas. I asked the nurse for some antacids. When the pain didn’t go away in a couple of hours, I asked for another dose. Still no relief. I called the nurse and asked her to call the doctor on call. At around 11:30 she called him and he had her re-run PIH labs. They were run stat, and came back higher than 6 hours earlier, but nothing outrageous according to on-call doc. Still I didn’t feel right. I had her call him again asking him if this could be my PIH progressing. He told her that the labs didn’t look like it and she should offer me an ambien so I could calm down and sleep.
I flatly refused the sleeping pill because I didn’t want to be out of it if something wrong was happening inside me. The pain got worse and worse.
August 30, 2005: It was a little after 2:00 a.m. and the pain was only increasing. I was getting a headache and feeling more nauseous. I called the nurse and basically demanded she call Dr. G. She reminded me he was not on call. I told her I knew that but that he had left a note in my chart that it was OK to call him if I felt he needed to be called. She went and verified this and called him. She came back into the room with the phone and told me the doctor wanted to talk to me. I apologized profusely for waking him and he told me it was no problem. He asked me to rate the pain in my upper stomach. I told him it was on the right and it was a 9 out of 10. He simply said, “I’m on my way” and hung up.
10 minutes later, the scent of Dr. G’s cologne filled the room and he was dressed in scrubs. Brandon had been sleeping off and on, but he awoke to the scent and sound of the doctor entering the room. Both our hearts fell. We knew that scrubs was a bad sign. The doctor came over to me, lifted my shirt and saw my distended liver. I had had no idea how big it had gotten or that the outline of it could be seen through my skin. I looked at the doctor and asked, “HELLP syndrome?” I had read about HELLP syndrome while on bedrest in the hospital as a potential complication of PIH, but I never really figured I might get it. He nodded and said, “Most likely with your liver being this enlarged, but we really don’t have time to wait for the labs to get back.” (The next day the labs would reveal that I was rapidly developing Class 1 HELLP syndrome and that early detection probably saved my life)
In moments, an anesthesiologist came into the room and discussed the cesarean section with me and had the consent paperwork with him. He explained the a c-section with epidural anesthesia was too risky because I had had a dose of heparin just hours before. I would need to be under general anesthesia for the birth. This meant Brandon could not be in the delivery room. I felt panicked but knew that it had to be done. Before I knew it I was saying a tearful goodbye to Brandon and giving him one last apology for not being able to keep our son in longer.
As I was wheeled into the operating room, I couldn’t believe how many people were waiting there. Were all of these people really for just my delivery?
As the anesthesiologist was preparing to put me under, it must have become evident to Dr. G how scared I was. He asked if I would like him to hold my hand while I went under. I nodded yes. He came around, held my hand, and told me “Don’t be scared. It’s time to meet your son.”
That is the last thing I remember until the recovery room nurse was waking me. “How is he?” I blurted. She told me he was small, 1 pound 8 ounces, but feisty. She told me he came out pink and thrashing and my husband was with him.
I often think of what the 40 minutes in the hallway outside the operating room must have been like for my husband. He stood out there waiting to hear what his future held, feeling powerless. Was he taking a baby home, or even his wife? At 3:24 a.m. Aidan was born. At 3:40 a.m. the door to the O.R. opened and a doctor and two nurses pushing an incubator emerged. The neonatologist told my husband to follow him up to the NICU. Brandon nervously asked about me and the neonatologist was shocked that nobody had been out to talk to him.
They told Brandon I had had considerable trouble clotting and that removal of the placenta was difficult and that it came out in many pieces. They had given me a lot of blood (about 5 units), but I seemed to be clotting now and that I was going to be OK.
Brandon watched his son in the dim light of Aidan’s NICU room being wired up. Sensors for everything imaginable. But this little 1.5 pound, 12 inch baby was doing seemingly well. An active little guy for his size according to the staff. Apgars of 7 then 8.
Our son was here. And the rollercoaster ride was just beginning.
) I got him a cheeseburger (I thought I’d give it a try) and took the meal home. He sat up and had almost all the fries and about 1/3 of the cheeseburger!!! Meats have been a sticking point for Aidan. He has tended not to know what to do with them so he chews and chews and then there is like a meat paste left in his mouth. But he really ate this cheeseburger! He has been doing this with more and more foods lately. Perhaps because he has all his 2 year molars?
There are none.
