In honor of World Prematurity Day (11/17/11), I wore purple, and for the first time I wrote down my story. There are pieces missing. But this is all I felt comfortable putting into words... for now. And... it is good enough for now...
I woke up at 5am on February 7th with a feeling of terrible heartburn. I tried for about 30 mins to get comfortable. I changed positions, I changed rooms, I just couldn’t fix it and it was getting worse. Something told me that this was more than heartburn and I (the one who NEVER goes to the doctor or hospital) literally pulled BJ out of the shower. I told him that we needed to go to the hospital right now. He got out of the shower and told me to get in the car and he would be out in a minute. Being the cute and responsible BJ, he came outside with the dogs to walk them before we left. I yelled out the window “DON’T WALK THE DOGS! GET IN THE CAR!”. He ran them inside and tossed them in the house (he didn’t lock them up in the living room—total freedom!).
All it took at the ER was for DH to say “my wife is 27w6d pregnant and is having pains” and they put me in a wheelchair and wheeled me straight to L&D. I told them what was going on and they took my blood pressure. The look on the nurses’ face will forever be ingrained in my head. I said, “is it high?”. She told me that it couldn’t possibly be right and that she would take it again in a little bit. A little bit (and I mean… a short bit) later she took it again. This time she told me what it was: 220/120. Within seconds I was swarmed by nurses, doctors, OBs, and Neos. I had people poking and prodding in all places on my body. The next thing I hear is that they are getting me a transport to the city hospital. Then the Neos turn… the risks and complications of having a baby at 27w6d. “WHAT?!?!? Why are you telling me this? I am only 27w6d. Can’t you just bring down my BP and let me go on with my pregnancy?”
I had no idea what was about to happen to us.
Poor BJ was trying to grasp all of this as well as take control of calling my parents, his parents, my work, his work, his brother and sister to take care of the poor dogs who were roaming the house (or probably laying on the couch as always!).
The transport arrived to take us to the city hospital. It was rush hour on the pike. But, in no time we were there. I was rolled into a room there where I was re-hooked up to all of the machines. They took my BP every 5 minutes. I was put on the Magnesium (ugh… so hot!) as well as a million other things going on at once. I was in a fog and just doing what they said. I couldn’t ask any questions, I didn’t know what to ask, there were too many. I was still trying to digest what exactly was happening. No one had said the word “pre-eclampsia”, no one had said anything. As the shifts in the hospital changed, I got the run-down from the OBs/MFMs and the Neos AGAIN. Then again when the shift change came again, and then again, and again... I couldn’t even imagine. I was barely into 3rd tri... what was going on?
After a while (my concept of time was very skewed and I have little memory of the times) my BP was more stable and they let me move to a less intensive room around the corner. I was monitored a little less but the constant was “you will be here (the hospital) until your baby is born. It could be today, tomorrow, next week, next month, or full term. We don’t know. But most likely you won’t get to 29 weeks.” I has multiple ultrasounds and BPPs (bio-physical profile) and was constantly hooked up to a machine that was tracking SPUD.
Then the dance began. I was moved back to a more intensive room, than back to the less intensive, back to the more, and then back to the less. Every time my BP spiked, I was moved. We made it 5 days of this dance before SPUD wasn’t looking so good on his tracings. I was now 28w4d.
BJ was out getting us something for dinner (hospital food gets old real fast!) when the OBs came in and said “it’s time. We are going to take him now.” Um… what?!?! I pleaded for them to wait for BJ and they said they would wait no more than an hour. I was rolled into a room to be prepped and BJ arrived shortly after. They had him gown up.
They brought me into the OR and did the spinal for the c-section. It didn’t work. Seriously? They had to put me completely under... general anesthesia. So much for my completely natural home birth that I wanted. BJ couldn't come in. I was alone and asleep.
The next few hours are kind of a blur. But when I woke up I didn’t know what was going on. I had no idea if he lived or died, if he was breathing, if he was going to be ok. I didn’t know how big he was, what his APGAR scores were, or what he looked like.
Meanwhile, BJ got a chance to see him... and when I say "see him", I mean, they rolled him by him in the isolette and paused for a few seconds for a photo.
As I started to wake up, I don't remember much except for making my dad check my legs because I thought they were shaking. They had the pulse socks on them. Eventually, they rolled me in to see SPUD, who was now called Tyler. I put my hand on him through the porthole of the isolette. I was scared. I didn’t know what to think, what to feel, what to do. This was my son. I was supposed to be happy and excited and love him more than I have ever loved before. But I was numb. A feeling that I will probably never forgive myself for having.
This was the start of a long journey. At some point I found out that he was born at 2lbs, 2oz (940grams) and 14.5 in long. I soon learned a lot of things I never thought I would have to learn.
Tyler was intebated for just 24 hours. He was on the CPAP for 8 days and then the cannula for 5 days. He was under the Billi lights for 8 days. He had multiple apnea spells, bradies, and de-sats. At 2 weeks old (30w4d) he was breathing on his own. He was still a peanut and still around 1 kilo. However they were talking about transferring him back to the Special Care Nursery in our local hospital because he was doing so well. At 20 days old, they decided to transport him back to the local hospital where this whole journey began.
He spent the next 62 days (a total of 82 days) at the SCN growing and changing. He had the typical preemie issues (apnea, bradies, de-sats, brain damage, feeding problems etc.) but overall it was fairly uneventful. He had a few choking episodes where he turned blue but luckily, only once while I was there.
What kept him in the hospital for so long were his problems around feeding. We thought that maybe there was a milk protein allergy so we put Tyler on Alimentum and he seemed to do better. So they discharged him the day after his due date. He was finally home!
11 days later, he decided to test Mommy’s ability to act quickly and choke. He turned blue and I needed to bulb syringe him while BJ pounded his back. He finally was ok but the Pedi wanted us to go to the ER to be sure. The neo decided to send us back to the city hospital to be seen by the feeding clinic. What? Seriously? I JUST got my baby home and now you are taking him again?
Off he went for another 6 days. They did all sorts of tests including; an EKG, an Upper GI series, and an ECHO. They found severe reflux and so over the course of the next few months we tried to get that under control with the help of the pediatric GI specialist. They continued him on the Alimentum but had us thicken it with rice and oat cereal. He was originally put on Zantac but with the Pedi and GI specialist we added Prilosec as well. He was also getting prune juice and a laxative because with the rice and oats and Zantac, he was getting backed up (TMI? I hope Tyler doesn't read this someday!)
Here we are today… Tyler is a fairly healthy 9m (6m adj) baby. He is seen by EI and PT for some muscle tightness in his hips and shoulders. Back in the NICU they saw a spot on his brain with an ultrasound and thought it was a cyst. They suggested an MRI when he was older. What they found was not a cyst, but a smoothness on the front left side of his brain. But for now, they don't know what it will bring, if anything. They are watching him very closely. Many specialists follow him but they are all impressed with his development thus far and just check in every 6 months. He is currently 13.14lbs and 25in. He is sitting on his own (with some wobbling!). He is a smiley happy little guy.
I love him more than I could have ever imagined loving anything.
As for me… It took 6 days for my BP to stabilize with a lot of medication. I was released and then readmitted within 24 hours with another spike in my BP. I was kept for another 4 days. I was followed by a visiting nurse for 2 weeks and the MFM for 6 weeks. I am still on BP meds and am working with my PCP about what to do next. I have become very involved with the Preeclampsia Foundation and raising awareness. I had never heard of the disease, yet it is the number 1 reason for maternal and fetal deaths in the world.
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