I recently wrote this up for a message board I just joined. I thought I would share it here:
Firstly, my husband (Kevin) and I decided to start TTC after I found out that I had a fibroid tumor in my uterus. These are benign usually (as mine was) but they can often make pregnancy difficult. Once we got the green light from my doctor to start TTC, we started right away.
But about 6 months later I started getting worried. I decided to see the doctor. Over the next year I saw several specialists who finally decided I had high FSH (in addition to the tumor!) - which means for some reason my ovaries are sluggish. So right away we moved into some pretty hard-core fertility treatments, including constant ultrasounds, hormone injections (sometimes two a day!) and an IUI (intra-uterine insemination).
My second cycle - it worked! I did a pregnancy test as soon as I was allowed and it (and the subsequent 30 tests I took over the next few days) showed I was pregnant.
They confirmed the pregnancy with a blood test, and then a few weeks later they wanted to confirm it with an ultrasound. This is typical of fertility clinics to confirm a good pregnancy before they pass you off to another doctor to monitor the pregnancy.
They did an intra-vaginal ultrasound and did see a sac, and it measured properly. Hooray!
But a few days later, I started bleeding. Really badly.
So I went back and they did another ultrasound. Everything looked okay. Hooray!
But a few days later, I started bleeding again. A clot came out the size of a hockey puck.
So I went back and they did another ultrasound. Still, everyting was okay. Yay!
This happened over and over for the first few months, until finally my doctor decided that I had some kind of tear that caused bleeding and clotting, but since the pregnancy was developing properly, I shouldn't really care. (Easy for him to say, right?) But, he went ahead and transfered me to an OB.
Then a funny thing happened - as soon as they stopped doing those damned intra-vaginal ultrasounds, the bleeding stopped! I guess they were jamming that wand in there enough that is caused my cervix to bleed.
So, at this point I was at about 16 weeks and was pretty happy with how things were finally going. I was sick a lot and losing weight because all I ate was fruit juice (don't think I've had any since the baby was born, lol!). But who cares, I was still pregnant, and all the morning sickness and food problems were just a testament to the fact that I still had my precious baby in me. Every morning when I threw up I smiled afterwards. (TMI I guess!)
I was trying to get to the 18 week point. After that, there is a much lower chance of miscarriage. So that was a big goal my husband and I had. Finally, when we hit 18 weeks I went out and bought maternity clothes and told my work I was pregnant. It was finally real. It was finally happening. I started planning the nursery and doing research online for the best car seat.
The next two weeks were great. I was still sick all the time, but I was sooo happy. Everyone at work was congratulating me and talking about babies. (After a year and a half of fertility treatments, I was obsessed with babies and loved talking about them!) My husband was doting on me and every day he would ask about how the baby was doing. (I'd read him entries in my day-by-day pregnancy book: "Today the baby has leg stubs! Yay!") I bought this book which showed these beautiful pictures of each stage of the pregnancy. It was a good time.
But, at 20 weeks, things changed. I was still sick and throwing up a lot, but it didn't seem bad enough to me to take any medication to help with nausea. We had a sales blitz at work, which meant a lot of extra work and stress for me. One day, on a sales call, I started to feel these pangs of pain low in my belly. Several women I consulted said that you feel all kinds of crazy things during pregnancy.
But it got worse. The next day I was having pretty strong pains and I did some online research and decided I had a bladder infection. I went to the emergency room and after checking for pre-term labor and doing a urine test they agreed with me (who needs doctors when you have Google?).
They gave me some medication and I went home. But the pains got worse, and I couldn't sleep because I was in so much pain. I was just writhing back and forth. So we went to the ER again at 4 am. I had to wait there until 7:30 because there was no doctor on duty (and I was almost crying with pain the entire time). The doctor said I was having bladder spasms and told me to buy this over-the-counter medication. I was NOT happy to sit in the hospital for three hours to hear that!
So I went home, took the medication, and felt much better. I was FINALLY able to sleep (after not sleeping for like 40 hours).
Later that day though, I felt some leakage. Google said that some strange leakage-type things can happen during pregnancy, so I wasn't too worried. Plus, I had my 20-week OB appointment the next day, so I could just ask about it then.
When I went to bed though, there was a mini-flood. There was a huge basketball-sized wet spot on my bed. I called the 24-hour nurses line and they said it was too early for amniotic fluid, so it was probably either urine or normal leakage. I was on that anti-spasm medication for my bladder still, and it turned my pee dark orange (like Orange Koolaid - yum!), so I very well knew it wasn't urine.
So at the OB's office the next day, I asked her to check the fluid right away before I gave any urine samples or anything. I got up in the stirrups and she looked in there.
"Do you see it?" I asked. "All the liquid?"
"Yes," she said. "I see it."
"So," I asked. "It's like, normal then?"
"No," she said in a horse voice.
So, that was a little frightening. But she wouldn't say more until it was checked.
A few weeks afterwards, here is how I wrote about the upcoming events in my blog:
I hadn't eaten at all that morning and was starting to feel sick. So while the OB and the nurse were running tests on my fluid, I remembered I had a bag of Jello Cherry fruit snacks in my jacket pocket. Unfortunately, it had ruptured (much like my amniotic sac, as I was about to find out), and many fruit snacks were in the bottom of my pocket (which is coated in some sort of unexplained sand from somewhere). It was kind of gross, so I was trying to figure out what else I could find to eat when the OB came back in, looking grim. I'm not sure where my jacket is now, Kevin must have taken it home. But those fruit snacks must still be in there.
She said it was amniotic fluid, and she expected me to go into labor within the next 24 hours. I asked her if it meant the baby was already dead, and she said no. I didn't know the baby could survive without water! I asked if the baby would be alive when I delivered, and how quickly would it die if so? She said it depended on the baby. I asked what was the chances for us to have a viable baby at this point. She said 5%. We didn't ask many other questions. I was very serious, trying to find out what was going on and yet trying not to think about what was really happening. Kevin's face was horrible though. I could tell he was absolutely crushed and was holding back tears.
But, for now, she wanted to get me to labor and delivery as soon as possible. I should go IMMEDIATELY to the hospital. Do not register. Do not wait in any lines. Do not pass Go. The doctor said she would meet us at the hospital later.
As we walked out, one of the nurses was on the phone with the hospital, letting them know I was on my way. I remember her saying something about "premature rupture." Her voice was low and serious.
We stepped outside and I walked out the door ahead of Kevin. I grabbed his hand and said I was sorry. He said it wasn't my fault and we squeezed hands.
When we got into the car, I started talking about our 5% chance. It was SOMETHING. I don't think Kevin said anything. Then I said something like, I can't believe this is happening. And I started to cry a little bit. Kevin begged me not to cry, and his voice was breaking up, and I knew that I had to try to be strong to help him keep it together.
He dropped me off in front of the hospital, and I asked people where Labor & Delivery was. I got some instructions and started to follow them, but I kept getting lost and having to ask someone else. It was hard for me to concentrate. Every time I would be walking alone down the hall, I kept thinking, "This can't be happening." And my eyes would start to water. But I'd have to try to pull it together to ask someone else where I was going.
Finally I was walking down the hall in the labor area. But I still didn't know where to go. At this point, Kevin caught up with me (did he already register? I guess I don't really know). We passed a nurses station, and Kevin said we should go back and ask them where to go. But on our way back a nurse came up and asked if I was Christine. Then we followed her back to one of the rooms.
They gave me a hospital gown and sent me to the bathroom to get changed. While in there, I looked at myself in the mirror. I had started crying again a little bit, and I told myself to stop. My face was red.
I put on the gown and put my clothes into a large plastic bag that they gave me. I looked at the bathroom and thought that it wasn't too bad. It was pretty big and seemed clean. I wouldn't get to go in there again though.
I went over to the bed and they were changing the sheets, I think. Kevin was standing there. I hadn't tied my gown behind me, so I held it closed in back so I didn't show my butt to everyone. I didn't know it then, but this would be the last time I would stand up for several weeks.
I got into the bed and they put me in the tradelenburg position, with my head lower than my feet (to take pressure off the cervix and to reduce leakage). They did an ultrasound and we saw the baby in there - he was alive and doing well, but there was no visible fluid. Good news and bad news.
They tried to put me on a toco monitor, but they couldn't find the baby's heartbeat (with the fibroid it was too hard to find at such an early gestational age). They were going to leave the toco on me to measure contrations, but it was really uncomfortable (it was pressing right on the fibroid) so they let me take it off if I promised I'd let them know if I felt any contractions.
Honestly, I don't remember what else happened for a while. At some point the doctor came and she had printed out these statistics regarding our chances to have a baby. She said she knew we were "researchers" and we would want to know the exact numbers. Again, we had a 5% to 10% chance. 80% of women go into labor in the first week after a rupture, most within the first 24 hours. 90% go into labor within 2 weeks. I kept reminding the doctor, however, that it had already been 24 hours since my water broke. So that was a small ray of hope. It didn't seem to cheer up the doctor though, she was very grim.
Kevin went home at some point. He told my boss at work either that day or the next day. He said she put her face in her hands and said something about me being stressed out due to work recently.
Later, when I was alone, I called my mom and dad and told them of the situation. Both calls were very teary.
I couldn't sleep at all. I had a horrible headache from being in the trandelenburg position and they woudn't let me eat anything (due to impending labor). I was SOOOO hungry. I was on IV antibiotics and fluids, which made me a little sick to my stomach. They offered to give me a sleeping pill, but I didn't want to hurt the baby more than I needed to.
At some point during the night, I finally let myself cry. I didn't cry too hard, because that would have made my headache much worse! But I kept asking why this was happening to me. Why was having a baby SO hard? We had fertility problems, then expensive fertility treatments, then bleeding at the beginning of the pregnancy, then I was sick, then the bladder infection, then THIS. No one wants a baby more than me - how is it fair that I must endure this?
24 weeks is the viability date, and I kept thinking of that time. I remember praying HARD that I wanted to be transported in the future to the 24 week point. I just wanted to skip over the horrible month of uncertainty. I couldn't stand not knowing what was going to happen.
I also tried to prepare myself for the worst. It was very likely that I would go into labor and my baby would come out alive. It would not be viable and there would be no attempt to save it. It would eventually suffocate from lack of oxygen and die - if it came out alive, that is.
I spoke with Kevin about this possibility. I wanted to prepare him that the baby would probably be alive and we would want to hold him. Kevin didn't think he could handle seeing the baby, and he especially felt that he couldn't sit there while the baby died, but I felt it was important to say goodbye. Actually I saw an ER episode where the lady's baby was born dead and she refused to see it. All of the nurses begged her because they said that if she didn't have some closure and see her baby, she would never be able to forgive herself. So I tried to convince Kevin that it was extremely important that he see the baby. I also had Kevin buy a camera so we could take pictures of the baby when it came out. We also prepared ourselves for the fact that if I went into labor while Kevin was at home (30 mins away), he might miss the whole process (with such a small baby, it might come out very quickly).
And, since we didn't know the sex, we'd have to find out when the baby came out. Then we'd have to think about a name. And perhaps a funeral. What do we do about a funeral?
I also tried to think ahead and figure out what to do in the future. I planned on getting the damed fibroid removed. Then, hopefully we'd be able to conceive without fertility treatments. There was a plan, and I felt better that there was a plan. Life would go on. I would survive.
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So, the risk of preterm rupture is that, without the protection of the amniotic sac, there is a huge risk of infection. If there is an infection, both my life and the baby's life are in big danger. For this reason, many doctors will induce labor in this situation (preterm rupture before the baby is viable). The baby will almost surely die anyway, and you reduce the risk of death to the mother.
My doctor, however, knew that we had tried VERY hard to have this pregnancy, and I'm sure she suspected (correctly) that I wouldn't let anyone induce anything! I wasn't going to lose my baby to get rid of some low percentage chance I would die. No way.
So, my doctor said she was going to monitor my white blood cell count every day, to see if she could get an early detection on if an infection was starting. I can't remember the exact numbers, but I believe my count originally was around 8,000.
One day though, my count spiked to 10,000. And some specialist guy came in and informed me that the new cells that were being created were called neutrophils, and they were the ones the body creates to fight a bacterial infection. So, I was getting the exact kind on infection I didn't want.
My doctor came in later and said that this was the bad sign we were hoping wouldn't happen. "Most doctors would terminate the pregnancy now," she said.
But I was only at 22 weeks, and the baby wouldn't be viable. "Give me one more day," I begged. "If we terminate now, and I don't get a horrible infection, I will never be able to live with myself." I didn't feel sick, I didn't even have a headache. How sick could I be?
So she gave me one more day. She said if I hit 15,000 (again, I might be slightly off on the numbers, and I can't find them in my blog for some reason), that's the sign that I basically have a raging bacterial infection and we would for sure terminate the pregnancy in order to save MY life (but we would lose the baby's life).
The next day they wouldn't tell me the numbers forever. The specialist guy wasn't around in the morning, and the nursers didn't have permission to tell me. Finally around noon the guy came in, very serious looking.
My count had now spiked up to 15,100 or so. It was time to make a decision and my doctor would be in later to discuss it.
I had several heartbreaking calls with my parents and my husband (who was at work) and I just couldn't bring myself to terminate the pregnancy. I felt fine, had no temperature, nothing.
I was crying, and one of the nurses attempted to counsel me. "I know the baby is important to you," she said. "But YOU are more important. You can always have another baby."
She really meant well, I know, but I can't tell you how much that statement pissed me off. How can you determine whose life is more important? How can you say I need to save my own life, when I feel fine? What are the chances that I will die? 10%? Should I kill my baby to save me from a 10% chance of dying? Or is it like 80% chance that I'll die? Should I kill my baby to save me from an 80% chance?
Finally my OB came in. She was very sad, but didn't really say much at first. She just let me talk for a while about how I didn't want to terminate the pregnancy. I wanted to FEEL SICK first. I wanted there to be some kind of sign that I was REALLY going to get an infection before I made this disastrous decision.
She held up my test results (showing 15,100 count) and said, "This is your sign."
She was not, however, able to produce any statistics showing my chance of dying to an infection so I could make a better decision. She did, however, point out that if *I* got an infection, the baby almost certainly would too (since it would be an intra-uterine infection). And a baby this premature (if it somehow survived to the viable stage) would not be able to handle it.
But, after talking to her forever, I finally convinced her to wait another day. ONE MORE DAY. If my count still went up, or I showed other signs of infection, then we'd make a decision. (Though, I can tell you now - I'd have begged for another day!)
The rest of that whole day and night, I spoke to my body. I asked for the little white blood cells to take care of their business and go away! I drank a ton of water (trying to flush out my system). I prayed a lot.
The next morning, my count was back down to 8,000. Crisis averted. No termination.
I have spoke to a few OBs since then, and they say it was crazeeee for my doctor to let me wait another day after getting a blood cell count of 15k. Of course, looking back it was a good decision! But I'm lucky I had a really young doctor who didn't know what she was doing!
Time went on, and eventually I hit 24 weeks (viability stage!). My doctor said that no one in the hospital had ever seen this happen before, so she wanted to transfer me to a big Chicago hospital where I could see a team of specialists.
We did that, and I continued to struggle with various small things for the next few weeks while I stayed on complete bed rest (no getting up, even to go to the bathroom, and I wasn't even allowed to sit up more than 30 degrees). My white blood cell count spiked a few more times (it was much easier to convince the doctors not to induce labor these times since it had gone up and done before). I also had some problems with my heart beat being too fast, and they kept testing me for all these wacky things that could be causing it, but it never amounted to anything. At the same time, I was still sick all the time and was losing weight, and couldn't eat the hospital food (looking at the menu made me throw up - seriously). I refused to take medication for it though, and my husband brought me lots of fruit snacks, jolly ranchers (another thing that I haven't eaten since having the baby!) and sometimes pizza.
The weeks went by, however, and things continued along. My doctors decided that we would do a scheduled c-section at 34 weeks because the baby would be fine at that point and infection was still a huge problem.
Doctors and specialists kept visiting daily, telling me how great I was doing and what a medical miracle I was. They even had other women on bedrest come and talk to me in the hopes that some of my "positive attitude" would rub off on them.
One big issue we had was that I was still laying flat. At about 28 weeks, the doctors started advising me that I should get up and start walking around. For example, going to the bathroom. Although this sounds like it would be a good thing, both my husband and I felt that things were going so well, why change it?
The doctors said that - even though I was trying to exercise in bed and flipping from side to side to prevent bedsores - I was losing muscle mass quickly and by the time 34 weeks came, I probably would not be able to walk. I would need to be in a wheelchair and would need physical therapy.
But, really, what do I care about whether or not I can walk for a while versus the health and safety of my baby?
Then they told me that if I didn't get up, I would risk getting blood clots. This is a valid concern, but pretty rare. I still argued with them though, and they ended up giving me heprin shots (a blood thinner that feels like a bad bee sting each time you get it!) twice a day. I had these really horrible golf-ball sized bruises up and down my arms and thighs due to these horrible shots.
But, things kept processing well. The baby was growing well (in the 70th percentile for size!) and was passing all of his stress tests with flying colors. Every week they would do an ultrasound and check to see if my water was refilling (sometimes a sac reseals itself!) but I never had water. Once we saw the baby pretending to drink (this is how they practice eating and breathing) even though we didn't actually see any fluid! We found out he was a boy and decided to call him Phineas (or Phinny).
The wall I stared at for almost 100 days while on bedrest in the Chicago hospital. So many episodes of Charmed and The People's Court were watched on that TV.
We also did daily stress tests for 30 mins, and the baby's heartbeat was checked every 4 hours. My heartbeat and temperature was also checked regularly, to look for infection.
At about 32.5 weeks, against my husband's advice (I will regret this forever!) I decided it was okay to start getting up to practice walking. All my doctors were begging me to do this (one lady actually kind of yelled at me!), and they said that the baby was really high in my uterus and they wanted his head to drop down to make a c-section easier.
So, finally I got up and started walking around. It was very difficult at first, as you can imagine, and I couldn't stand up for very long without my legs shaking. The next day I was able to walk up and down the hall, however, and all of the doctors were very pleased with my strength.
I also felt the baby's head drop down. Remember I had this big fibroid tumor and he was kind of jammed up in the top of my uterus while the tumor was down below him. But, once I started walking around, his head pushed down next to the fibroid, closer to the exit.
On May 14, at about 9:30 am, a nurse came in and told me that it was time for my daily stress test. This was not one of my typical nurses, who had all gotten used to the routine that I would have my stress tests in the afternoons, not the mornings (because I was still sick in the morning and the stress tests were unbearable when I was feeling sick). But, this nurse said that she had something else to do, so I HAD to do it now. I argued with her quite a bit because I was really feeling bad and I really wanted to wait a few hours.
"Seriously," I said. "I don't feel good this morning. If you do it now, I'll throw up."
"I'll get you a bucket then," she said. And she came back with the stress test equipment and a pink bucket.
So, I got hooked up and right away we noticed that the baby's heartbeat was very variable. It would go really fast and then slow down quite a bit. Normally some amount of variability is good, but this was too much - it was faster than it should be, then it was slower than it should be. They called in a doctor.
The entire time I thought for sure it was nothing to worry about. I felt fine, no contractions or anything, it must just be something strange. Maybe the baby was reacting to the fact that I had just gotten up and started walking.
The doctor, on the other hand, said that she wanted me to go to the labor and delivery area for monitoring. Just as a precaution, she said.
It took about 30 minutes to get me down there (I had to switch to another bed for transport) and when I got there they started monitoring me again.
This time, the baby's heartbeat was much faster. Then it started to slow down, and it went REALLY slowly. They called in a general surgeon that was on duty and he said it was time for delivery, the baby was in stress.
(Looking back, if that first nurse hadn't insisted I do the stress test in the morning and we had waited until the afternoon, the baby surely would have died!)
They also called my main doctor and it would take about an hour for him to get here, and he would do the c-section.
But, they kept monitoring me, and the baby's heartbeat just got worse. It went faster, and then slower, and then even faster, and then even slower.
I started to get freaked out, and I wasn't able to sit still. They gave me an oxygen mask, but I couldn't keep it on my face because it made me feel claustrophobic and panicked. Even when the nurse told me that I needed the extra oxygen for my baby - I still couldn't keep it on. I kept pulling it off and trying to put it back, but pulling it off again.
The baby's heartbeat again went super fast, and again it dropped down really slow. Then, it stopped.
After about 3 seconds, the nurses started rushing around and one put a stethoscope to my belly, desperately searching for the heartbeat. Maybe he had just moved out of the monitor's range?
After about 5 seconds, it started again, and it slowly started speeding back up to the frantic speedy pace. One nurse ran and got the general surgeon who was on duty to prep me for a c-section.
By the time he got there, the heartbeat was starting to slow down again. And again, it stopped.
When he heard it, he shouted, "That's it! Get her to the OR! NOW!"
They immediately wheeled me down the hall, all the while listening for the baby's heartbeat on the stethoscope. No heartbeat.
When we got to the OR, it had started again, climbing back up to a frantic pace. The baby was in stress, and, frankly, he was slowly dying. They would have to work hard to get in there fast enough to get him out alive. They started prepping me for surgery and the anesthesiologist started to give me an epidural.
During the epidural, the heartbeat stopped again. The doctor barked, "Just get it done!" to the anesthesiologist. At this point, he just inserted the needle directly into my spinal column. It worked, and I started to grow numb.
At this point they must have given me some serious drugs because I finally calmed down. Even though I still had on the oxygen mask and they tied my hands to the table, I no longer felt claustrophobic. I felt rather calm and relaxed, in fact. Even as I felt the heavy weight of numbness climb up into my chest, making it slightly more difficult to breathe, I still felt calm.
My doctor still wasn't there, but they decided to go ahead and try to get the baby out. The general surgeon started cutting, and I unfortunately he cut into my tumor while cutting me open. Fibroid tumors are very fleshy and full of blood vessels, and he must have nicked one because blood splattered everywhere. The plastic shield he wore over his face was dripping with blood, and he yelled, "She's hemorrhaging! I need blood!" in this desperate, panicked voice.
They started giving me blood transfusions, and the anesthesiologist who was monitoring me said that if I started to feel faint, I should let him know because that meant I was losing too much blood.
Finally, my doctor showed up. He is this older Palestinian man who had this calm, know-it-all attitude that I loved. The general surgeon starts updating him when he comes in, and my doctor goes, "It's alright. It's no problem. Everything is OK. Let's get to the baby quickly."
After a few minutes, they pulled the baby out. He was light blue and limp as the doctor pulled him out and handed him to a nurse.
Now, the risk at this point is usually lung maturity. If he is too premature, his lungs won't be developed enough to breathe and he would be in danger of having brain damage, or even dying. If he is not strong enough, he won't be able to cry.
So, the entire time I was in the hospital, I always told myself that when he was born, I would listen for the cry. If he cried out when he was born, he would be OK. If he didn't, I would be worried.
And, as the nurse carried Phinny over to a table where perhaps a dozen nurses and doctors waited, I heard him cry out for the first time.
It was a really cute moment because I heard this audible "Awwww!" from all the nurses as they appreciated the cuteness and importance of that little cry.
Unfortunately, though he managed a few weak cries, he wasn't breathing well and wasn't getting his color back. They bagged him (with a mask on his face and a bag of air that they would squeeze to force air into his lungs) and he cried a little bit again. (Again, all the nurses "Awww"ed at him!). But, then they had to bag him again.
After a few minutes, they told me he wasn't breathing well and they had to take him to the ICU. They showed him to me for perhaps 1 second before whisking him away.
Honestly though, I wasn't too worried because I had heard him cry (and, probably because I was so drugged up). I'm not sure why, but it HAD to be okay if he was strong enough to cry!
Also, I should say that another thing we were worried about were deformities caused by lack of fluid in the womb. The water serves as a cushion and helps the baby form correctly. Phinny never had any water though, so there was a risk some things might be misshapen. And, when the doctor pulled him out, the general surgeon said, "Is his head deformed?" (Hello, doctor? I'm awake, I can hear you!)
When they showed Phinny to me though, I couldn't see anything wrong with him!
Anyway, back to me. I was still hemorrhaging and losing blood fast. My doctor (the cool-headed one) says that they are going to do a myomectomy (where they surgically remove fibroids). This was very risky because a pregnant uterus looses blood quickly and I was already hemorrhaging. But, they had to stop the bleeding, so it was either remove the tumor (very risky) or remove my uterus (much less risky, but then I'd have no uterus, which would suck).
So, he starts doing this long, drawn-out, complicated surgery on my uterus. A little while after my first blood transfusion, I started getting dizzy and light headed, so they gave me another liter of blood. A little while later, I felt dizzy again, so they gave me another liter. They ended up replacing 4 liters of blood, or perhaps 80% of my entire blood volume.
Then another problem rears it's ugly head (as if things weren't going perfectly already!). I had only gotten an epidural, which lasts about an hour. But, they were in the middle of doing a myomectomy on a pregnant uterus, which is complicated and which takes a long time.
So, at some point, I start feeling my toes. So I say, "I'm getting some feeling back in my feet."
The anesthesiologist says, "We may have to put you under, so let me know before it starts hurting."
I didn't want general anesthesia though, so I decided I was going to wait as long as possible. So I felt my feet wake up, and then my calves, and then my thighs.
So I ask, "How much longer on the surgery?" and my doctor answers, "Oh, quite a while if you want it done right!"
At this point I can feel my butt on the table and I can feel some pressure in my abdomen so I ask for the general anesthesia.
"Okay," says the anesthesiologist, "it will take about 5 minutes to kick in."
Uh oh, I didn't know that. I thought it would be instant! So now I start to panic through the drugs they're giving me to relax. I could already feel the epidural waking up, and I could feel a slight stinging in my belly where they had me sliced open from bikini line to about 2 inches above my belly button, and with my uterus entirely out of my abdomen and sliced almost in half. That is NOT something I want to FEEL.
Luckily though, as soon as they put the mask on my face, I was out cold.
I woke up some time later in the recovery room with The. Worst. Headache. Ever. And, I had totally lost my voice and was soooo thirsty I could drink the ocean.
I whisper that I NEEEEEED water, and the nurse says I can't have any. I am only allowed ice chips. So I ate them, and then I ate some more, and then I ate some more. The nurse refused to give me more ice chips, and I actually tricked another nurse into giving me some, and then I threw up (I think the first nurse felt somewhat vindicated).
I slept on an off for a while, each time I woke up I'd ask if there was an update on the baby and if I could have more ice chips. I hadn't seen my husband yet and wasn't sure if anyone had even been able to get a hold of him. He might not even yet know that his wife and baby had almost died, and might die still.
My head was pounding anytime I would move it even slightly. I would actually see bright colored stars and funny shapes if I tried to sit up. And the pain in my head was so intense that it would make me throw up.
Then one of the baby's nurses came and told me that little Phinny wasn't doing too well, and I should go and see him now.
The thought of moving was so horrible and I was so sick that I said I couldn't go right now. I needed to rest. Perhaps she would get me some ice chips?
But she leaned over and said in a soft whisper, "I'm not sure if he will make it through the night, and I want you to meet your baby while he is still alive."
That worked, and I agreed to go. I don't remember too much about it, honestly, but when I first saw him there were just so many tubes and IVs that you could hardly see his face.
The first day
He had a handful of IVs going into his belly button. He had another IV going directly into his forehead and several pieces of tape covering it. He had this giant tube down his throat (he was intubated and on 100% oxygen) and it was taped to his face with a huge piece of white tape under his nose. He had another, small tube going into his nostril. He was in a state of medically induced unconsciousness.
They gave him a chance of survival at about 10%. And, within that 10% there were all kinds of problems that could occur (like cerebral palsy or blindness). So now after overcoming a 5% chance of having a viable baby, we had to overcome a 10% survival and after than we have to overcome about a 5% chance of being developmentally OK.
Anyway, I got to hold him, and it was great. I was shocked that he looked so big for a baby born 2 weeks premature and supposedly about to die. (He was more than 5 pounds!).
I held him for a few minutes and the nurse said that they had been trying to stabilize his blood pressure and heart rate, and while I was holding him everything stabilized for a few minutes! It was very cute.
Unfortunately, I still was feeling horrible and they didn't want me to hold him too long, so the meeting ended. I went back to the recovery room.
My husband (who was late because we lived so far away from the hospital) finally showed up and was able to give me infrequent updates on the baby. He was still in critical condition and on 100% oxygen, but he was still alive for the time being. He wasn't really responding well to anything they were trying to do for him, and he had almost no white blood cell count (so they weren't sure if he had an infection or if his immune system was just totally shut down).
Phinny lived through the first night though, which, according to the doctors, was a good sign.
My headaches only got worse though. I was not able to eat anything because I would throw up anytime I moved my head slightly. I just sat in my room with the lights off.
I tried to see the baby a few times over the next few days, but I think I only made it one time, and was only able to stay for a few minutes without throwing up.
I did, however, manage to give him a little speech that he needed to buck up and start fighting. "Get your act together, dude!" I said. "I need to get myself better, and so do you. So let's get to work."
The next day, his immune system spiked up to 32! The bad news was that this meant he had a raging infection, but the good news was that it meant he was finally fighting it!
Phinny in the neo-natal intensive care unit
My headaches were still totally unbearable. I would sit up all night moaning and calling for the nurse, who would give me another pill (of something, I don't remember what). The doctors said that they thought I was under a lot of stress, and that's why I was having the headaches. They sent in a psychiatrist to evaluate me, but she said I seemed OK. I was sad, but my baby was dying, shouldn't I be somewhat sad?
Then they finally asked a neurologist to evaluate me. Without even really asking me any questions, he looked at my chart and saw that I had had an emergency epidural that ended up with a lumbar puncture, and he knew right away that that was the problem. My spinal fluid was leaking out at the point of puncture and it was causing "spinal headaches."
So they gave me an IV of caffeine and within about an hour I was finally better! At least for a while, I head headaches on an off for a few weeks after that. I love caffeine! Since then, I have hoped that one day some company would invent IV caffeine drips for home use, but I have not found any.
The baby was still doing OK. He was taking two steps forward, and then a step back. One of his lungs collapsed, and they had to give him a chest tube (he still has the scar today). Once they had his lung re-inflated, his oxygen levels improved some.
Phinny on the ventilator. He's yawning!
Two different doctors gave me the very grave news that just because he has so far survived, it doesn't mean that we're out of the woods. His oxygen levels when we were born were at about a "2" for 24 hours, and with such lack of oxygen for so long, serious brain damage could occur. Plus, he was on 100% oxygen for more than a full week, which could cause blindness and other problems. He was at significant risk for mental retardation, cerebral palsy, blindness, heart problems and more.
He had been in critical condition on the ventilator and feeding tube (essentially, full life support) for a few weeks and wasn't showing terrific improvement. They thought perhaps it was because he might be too brain damaged to breathe on his own. They said that they were going to do an electroencephalogram (EEG) to check for brain activity. If the EEG showed no or little brain activity, they felt we should talk about taking him off life support. And, he would almost surely die.
The first EEG was inconclusive. Which was OK because we didn't have to have the discussion about life support. It was also OK because it didn't show any significant brain bleeds (which is a problem with preemies).
Days and weeks passed, and eventually Phinny slowly started getting better.
Here is an entry from my blog:
But let me get to the fantastic news. Phinny is doing GREAT!!!! He came off the ventilator last weekend and has been getting better ever since. He's getting breastmilk now through a feeding tube, and he's off almost all of his medications. He still has some breathing help (a CPAP) but I don't think he really needs it, and I bet they take it off in a day or so. Honestly, he pulls it out all the time, so pretty much any time he's awake he's not on it! The nurse even let me take it off just to take his picture, so obiously her feeling was that it isn't TOO necessary. He will probably be able to come home in a week or so, maybe sooner. Before he goes home he needs to be able to breast/bottle feed (which means he needs to know how to suck and swallow while still breathing) but he already can suck on a pacifier while breathing (the nurses gave him one) so I don't think that will be a problem!
I had been struggling with this feeling that I wasn't really connected to Phinny. We didn't really go through the bonding thing, you know? However, when his ventilator finally came out and his sedation was turned down and he started to move and cry for the first time, my heart totally exploded! Now I can't stop thinking about him.
He's so cute I could practically eat him. I want to play with him all the time. I soooo wish he was here with me.
And I love all the different cries he makes. I haven't heard a real ANGRY cry yet, but he has all these different levels of protest already. He has like a weak, "Ehhh" sound when he's just barely awake but he is slightly upset. And he has a short, quick, "Waah, ehh, hmm" when he's being movied or is irritated. Then of course my favorite, the loud but still calm, "Wah, wah, wah." Just letting you know I don't like this, but I'm not throwing a fit - YET.
And I love his hair. Right now it is medium brown, and it is the softest texture I've ever felt. Rubbing his head is like touching a cloud. There are a few spots on his head where they shaved it in order to put in an IV, so at some angles he looks quite punk rock. But I'm sure it will grow back into the old balding man pattern he had before.
And now when he's asleep I can see him dreaming. He was too zonked out to dream before, I think. His eyes roll around behind his eyelids and he twitches and makes sucking motions. I wonder what he's dreaming about? He can't be dreaming about eating since he's never actually eaten before (only through a feeding tube)!
----------End of blog entry-------------
Finally, after six weeks in the hospital, he was allowed to go home.
He never had premature longs (as initially suspected), he just had a really bad infection and he was so close to dying that his heart and breathing had almost stopped!
The good news is that once he got over the infection, he has really had no problems at all!
He came home with us around his due date, and didn't need a feeding tube or an apnea monitor or anything.
Now, he's 20 months old and is in perfect health and is actually a few months ahead developmentally. He talks and walks and does on the little toddler things you would expect.
He did end up with a little dent in his head, and a little bend in his leg, but all of the doctors feel that it will improve greatly as he grows up. And, I can tell you that it has! He looks totally normal now.
He's even in the 70th percentage for height for his birth date!
We're so very lucky to go through all of this and have a perfect, amazing, beautiful child. We thank our lucky stars every day for such a miracle.
Firstly, my husband (Kevin) and I decided to start TTC after I found out that I had a fibroid tumor in my uterus. These are benign usually (as mine was) but they can often make pregnancy difficult. Once we got the green light from my doctor to start TTC, we started right away.
But about 6 months later I started getting worried. I decided to see the doctor. Over the next year I saw several specialists who finally decided I had high FSH (in addition to the tumor!) - which means for some reason my ovaries are sluggish. So right away we moved into some pretty hard-core fertility treatments, including constant ultrasounds, hormone injections (sometimes two a day!) and an IUI (intra-uterine insemination).
My second cycle - it worked! I did a pregnancy test as soon as I was allowed and it (and the subsequent 30 tests I took over the next few days) showed I was pregnant.
They confirmed the pregnancy with a blood test, and then a few weeks later they wanted to confirm it with an ultrasound. This is typical of fertility clinics to confirm a good pregnancy before they pass you off to another doctor to monitor the pregnancy.
They did an intra-vaginal ultrasound and did see a sac, and it measured properly. Hooray!
But a few days later, I started bleeding. Really badly.
So I went back and they did another ultrasound. Everything looked okay. Hooray!
But a few days later, I started bleeding again. A clot came out the size of a hockey puck.
So I went back and they did another ultrasound. Still, everyting was okay. Yay!
This happened over and over for the first few months, until finally my doctor decided that I had some kind of tear that caused bleeding and clotting, but since the pregnancy was developing properly, I shouldn't really care. (Easy for him to say, right?) But, he went ahead and transfered me to an OB.
Then a funny thing happened - as soon as they stopped doing those damned intra-vaginal ultrasounds, the bleeding stopped! I guess they were jamming that wand in there enough that is caused my cervix to bleed.
So, at this point I was at about 16 weeks and was pretty happy with how things were finally going. I was sick a lot and losing weight because all I ate was fruit juice (don't think I've had any since the baby was born, lol!). But who cares, I was still pregnant, and all the morning sickness and food problems were just a testament to the fact that I still had my precious baby in me. Every morning when I threw up I smiled afterwards. (TMI I guess!)
I was trying to get to the 18 week point. After that, there is a much lower chance of miscarriage. So that was a big goal my husband and I had. Finally, when we hit 18 weeks I went out and bought maternity clothes and told my work I was pregnant. It was finally real. It was finally happening. I started planning the nursery and doing research online for the best car seat.
The next two weeks were great. I was still sick all the time, but I was sooo happy. Everyone at work was congratulating me and talking about babies. (After a year and a half of fertility treatments, I was obsessed with babies and loved talking about them!) My husband was doting on me and every day he would ask about how the baby was doing. (I'd read him entries in my day-by-day pregnancy book: "Today the baby has leg stubs! Yay!") I bought this book which showed these beautiful pictures of each stage of the pregnancy. It was a good time.
But, at 20 weeks, things changed. I was still sick and throwing up a lot, but it didn't seem bad enough to me to take any medication to help with nausea. We had a sales blitz at work, which meant a lot of extra work and stress for me. One day, on a sales call, I started to feel these pangs of pain low in my belly. Several women I consulted said that you feel all kinds of crazy things during pregnancy.
But it got worse. The next day I was having pretty strong pains and I did some online research and decided I had a bladder infection. I went to the emergency room and after checking for pre-term labor and doing a urine test they agreed with me (who needs doctors when you have Google?).
They gave me some medication and I went home. But the pains got worse, and I couldn't sleep because I was in so much pain. I was just writhing back and forth. So we went to the ER again at 4 am. I had to wait there until 7:30 because there was no doctor on duty (and I was almost crying with pain the entire time). The doctor said I was having bladder spasms and told me to buy this over-the-counter medication. I was NOT happy to sit in the hospital for three hours to hear that!
So I went home, took the medication, and felt much better. I was FINALLY able to sleep (after not sleeping for like 40 hours).
Later that day though, I felt some leakage. Google said that some strange leakage-type things can happen during pregnancy, so I wasn't too worried. Plus, I had my 20-week OB appointment the next day, so I could just ask about it then.
When I went to bed though, there was a mini-flood. There was a huge basketball-sized wet spot on my bed. I called the 24-hour nurses line and they said it was too early for amniotic fluid, so it was probably either urine or normal leakage. I was on that anti-spasm medication for my bladder still, and it turned my pee dark orange (like Orange Koolaid - yum!), so I very well knew it wasn't urine.
So at the OB's office the next day, I asked her to check the fluid right away before I gave any urine samples or anything. I got up in the stirrups and she looked in there.
"Do you see it?" I asked. "All the liquid?"
"Yes," she said. "I see it."
"So," I asked. "It's like, normal then?"
"No," she said in a horse voice.
So, that was a little frightening. But she wouldn't say more until it was checked.
A few weeks afterwards, here is how I wrote about the upcoming events in my blog:
I hadn't eaten at all that morning and was starting to feel sick. So while the OB and the nurse were running tests on my fluid, I remembered I had a bag of Jello Cherry fruit snacks in my jacket pocket. Unfortunately, it had ruptured (much like my amniotic sac, as I was about to find out), and many fruit snacks were in the bottom of my pocket (which is coated in some sort of unexplained sand from somewhere). It was kind of gross, so I was trying to figure out what else I could find to eat when the OB came back in, looking grim. I'm not sure where my jacket is now, Kevin must have taken it home. But those fruit snacks must still be in there.
She said it was amniotic fluid, and she expected me to go into labor within the next 24 hours. I asked her if it meant the baby was already dead, and she said no. I didn't know the baby could survive without water! I asked if the baby would be alive when I delivered, and how quickly would it die if so? She said it depended on the baby. I asked what was the chances for us to have a viable baby at this point. She said 5%. We didn't ask many other questions. I was very serious, trying to find out what was going on and yet trying not to think about what was really happening. Kevin's face was horrible though. I could tell he was absolutely crushed and was holding back tears.
But, for now, she wanted to get me to labor and delivery as soon as possible. I should go IMMEDIATELY to the hospital. Do not register. Do not wait in any lines. Do not pass Go. The doctor said she would meet us at the hospital later.
As we walked out, one of the nurses was on the phone with the hospital, letting them know I was on my way. I remember her saying something about "premature rupture." Her voice was low and serious.
We stepped outside and I walked out the door ahead of Kevin. I grabbed his hand and said I was sorry. He said it wasn't my fault and we squeezed hands.
When we got into the car, I started talking about our 5% chance. It was SOMETHING. I don't think Kevin said anything. Then I said something like, I can't believe this is happening. And I started to cry a little bit. Kevin begged me not to cry, and his voice was breaking up, and I knew that I had to try to be strong to help him keep it together.
He dropped me off in front of the hospital, and I asked people where Labor & Delivery was. I got some instructions and started to follow them, but I kept getting lost and having to ask someone else. It was hard for me to concentrate. Every time I would be walking alone down the hall, I kept thinking, "This can't be happening." And my eyes would start to water. But I'd have to try to pull it together to ask someone else where I was going.
Finally I was walking down the hall in the labor area. But I still didn't know where to go. At this point, Kevin caught up with me (did he already register? I guess I don't really know). We passed a nurses station, and Kevin said we should go back and ask them where to go. But on our way back a nurse came up and asked if I was Christine. Then we followed her back to one of the rooms.
They gave me a hospital gown and sent me to the bathroom to get changed. While in there, I looked at myself in the mirror. I had started crying again a little bit, and I told myself to stop. My face was red.
I put on the gown and put my clothes into a large plastic bag that they gave me. I looked at the bathroom and thought that it wasn't too bad. It was pretty big and seemed clean. I wouldn't get to go in there again though.
I went over to the bed and they were changing the sheets, I think. Kevin was standing there. I hadn't tied my gown behind me, so I held it closed in back so I didn't show my butt to everyone. I didn't know it then, but this would be the last time I would stand up for several weeks.
I got into the bed and they put me in the tradelenburg position, with my head lower than my feet (to take pressure off the cervix and to reduce leakage). They did an ultrasound and we saw the baby in there - he was alive and doing well, but there was no visible fluid. Good news and bad news.
They tried to put me on a toco monitor, but they couldn't find the baby's heartbeat (with the fibroid it was too hard to find at such an early gestational age). They were going to leave the toco on me to measure contrations, but it was really uncomfortable (it was pressing right on the fibroid) so they let me take it off if I promised I'd let them know if I felt any contractions.
Honestly, I don't remember what else happened for a while. At some point the doctor came and she had printed out these statistics regarding our chances to have a baby. She said she knew we were "researchers" and we would want to know the exact numbers. Again, we had a 5% to 10% chance. 80% of women go into labor in the first week after a rupture, most within the first 24 hours. 90% go into labor within 2 weeks. I kept reminding the doctor, however, that it had already been 24 hours since my water broke. So that was a small ray of hope. It didn't seem to cheer up the doctor though, she was very grim.
Kevin went home at some point. He told my boss at work either that day or the next day. He said she put her face in her hands and said something about me being stressed out due to work recently.
Later, when I was alone, I called my mom and dad and told them of the situation. Both calls were very teary.
I couldn't sleep at all. I had a horrible headache from being in the trandelenburg position and they woudn't let me eat anything (due to impending labor). I was SOOOO hungry. I was on IV antibiotics and fluids, which made me a little sick to my stomach. They offered to give me a sleeping pill, but I didn't want to hurt the baby more than I needed to.
At some point during the night, I finally let myself cry. I didn't cry too hard, because that would have made my headache much worse! But I kept asking why this was happening to me. Why was having a baby SO hard? We had fertility problems, then expensive fertility treatments, then bleeding at the beginning of the pregnancy, then I was sick, then the bladder infection, then THIS. No one wants a baby more than me - how is it fair that I must endure this?
24 weeks is the viability date, and I kept thinking of that time. I remember praying HARD that I wanted to be transported in the future to the 24 week point. I just wanted to skip over the horrible month of uncertainty. I couldn't stand not knowing what was going to happen.
I also tried to prepare myself for the worst. It was very likely that I would go into labor and my baby would come out alive. It would not be viable and there would be no attempt to save it. It would eventually suffocate from lack of oxygen and die - if it came out alive, that is.
I spoke with Kevin about this possibility. I wanted to prepare him that the baby would probably be alive and we would want to hold him. Kevin didn't think he could handle seeing the baby, and he especially felt that he couldn't sit there while the baby died, but I felt it was important to say goodbye. Actually I saw an ER episode where the lady's baby was born dead and she refused to see it. All of the nurses begged her because they said that if she didn't have some closure and see her baby, she would never be able to forgive herself. So I tried to convince Kevin that it was extremely important that he see the baby. I also had Kevin buy a camera so we could take pictures of the baby when it came out. We also prepared ourselves for the fact that if I went into labor while Kevin was at home (30 mins away), he might miss the whole process (with such a small baby, it might come out very quickly).
And, since we didn't know the sex, we'd have to find out when the baby came out. Then we'd have to think about a name. And perhaps a funeral. What do we do about a funeral?
I also tried to think ahead and figure out what to do in the future. I planned on getting the damed fibroid removed. Then, hopefully we'd be able to conceive without fertility treatments. There was a plan, and I felt better that there was a plan. Life would go on. I would survive.
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So, the risk of preterm rupture is that, without the protection of the amniotic sac, there is a huge risk of infection. If there is an infection, both my life and the baby's life are in big danger. For this reason, many doctors will induce labor in this situation (preterm rupture before the baby is viable). The baby will almost surely die anyway, and you reduce the risk of death to the mother.
My doctor, however, knew that we had tried VERY hard to have this pregnancy, and I'm sure she suspected (correctly) that I wouldn't let anyone induce anything! I wasn't going to lose my baby to get rid of some low percentage chance I would die. No way.
So, my doctor said she was going to monitor my white blood cell count every day, to see if she could get an early detection on if an infection was starting. I can't remember the exact numbers, but I believe my count originally was around 8,000.
One day though, my count spiked to 10,000. And some specialist guy came in and informed me that the new cells that were being created were called neutrophils, and they were the ones the body creates to fight a bacterial infection. So, I was getting the exact kind on infection I didn't want.
My doctor came in later and said that this was the bad sign we were hoping wouldn't happen. "Most doctors would terminate the pregnancy now," she said.
But I was only at 22 weeks, and the baby wouldn't be viable. "Give me one more day," I begged. "If we terminate now, and I don't get a horrible infection, I will never be able to live with myself." I didn't feel sick, I didn't even have a headache. How sick could I be?
So she gave me one more day. She said if I hit 15,000 (again, I might be slightly off on the numbers, and I can't find them in my blog for some reason), that's the sign that I basically have a raging bacterial infection and we would for sure terminate the pregnancy in order to save MY life (but we would lose the baby's life).
The next day they wouldn't tell me the numbers forever. The specialist guy wasn't around in the morning, and the nursers didn't have permission to tell me. Finally around noon the guy came in, very serious looking.
My count had now spiked up to 15,100 or so. It was time to make a decision and my doctor would be in later to discuss it.
I had several heartbreaking calls with my parents and my husband (who was at work) and I just couldn't bring myself to terminate the pregnancy. I felt fine, had no temperature, nothing.
I was crying, and one of the nurses attempted to counsel me. "I know the baby is important to you," she said. "But YOU are more important. You can always have another baby."
She really meant well, I know, but I can't tell you how much that statement pissed me off. How can you determine whose life is more important? How can you say I need to save my own life, when I feel fine? What are the chances that I will die? 10%? Should I kill my baby to save me from a 10% chance of dying? Or is it like 80% chance that I'll die? Should I kill my baby to save me from an 80% chance?
Finally my OB came in. She was very sad, but didn't really say much at first. She just let me talk for a while about how I didn't want to terminate the pregnancy. I wanted to FEEL SICK first. I wanted there to be some kind of sign that I was REALLY going to get an infection before I made this disastrous decision.
She held up my test results (showing 15,100 count) and said, "This is your sign."
She was not, however, able to produce any statistics showing my chance of dying to an infection so I could make a better decision. She did, however, point out that if *I* got an infection, the baby almost certainly would too (since it would be an intra-uterine infection). And a baby this premature (if it somehow survived to the viable stage) would not be able to handle it.
But, after talking to her forever, I finally convinced her to wait another day. ONE MORE DAY. If my count still went up, or I showed other signs of infection, then we'd make a decision. (Though, I can tell you now - I'd have begged for another day!)
The rest of that whole day and night, I spoke to my body. I asked for the little white blood cells to take care of their business and go away! I drank a ton of water (trying to flush out my system). I prayed a lot.
The next morning, my count was back down to 8,000. Crisis averted. No termination.
I have spoke to a few OBs since then, and they say it was crazeeee for my doctor to let me wait another day after getting a blood cell count of 15k. Of course, looking back it was a good decision! But I'm lucky I had a really young doctor who didn't know what she was doing!
Time went on, and eventually I hit 24 weeks (viability stage!). My doctor said that no one in the hospital had ever seen this happen before, so she wanted to transfer me to a big Chicago hospital where I could see a team of specialists.
We did that, and I continued to struggle with various small things for the next few weeks while I stayed on complete bed rest (no getting up, even to go to the bathroom, and I wasn't even allowed to sit up more than 30 degrees). My white blood cell count spiked a few more times (it was much easier to convince the doctors not to induce labor these times since it had gone up and done before). I also had some problems with my heart beat being too fast, and they kept testing me for all these wacky things that could be causing it, but it never amounted to anything. At the same time, I was still sick all the time and was losing weight, and couldn't eat the hospital food (looking at the menu made me throw up - seriously). I refused to take medication for it though, and my husband brought me lots of fruit snacks, jolly ranchers (another thing that I haven't eaten since having the baby!) and sometimes pizza.
The weeks went by, however, and things continued along. My doctors decided that we would do a scheduled c-section at 34 weeks because the baby would be fine at that point and infection was still a huge problem.
Doctors and specialists kept visiting daily, telling me how great I was doing and what a medical miracle I was. They even had other women on bedrest come and talk to me in the hopes that some of my "positive attitude" would rub off on them.
One big issue we had was that I was still laying flat. At about 28 weeks, the doctors started advising me that I should get up and start walking around. For example, going to the bathroom. Although this sounds like it would be a good thing, both my husband and I felt that things were going so well, why change it?
The doctors said that - even though I was trying to exercise in bed and flipping from side to side to prevent bedsores - I was losing muscle mass quickly and by the time 34 weeks came, I probably would not be able to walk. I would need to be in a wheelchair and would need physical therapy.
But, really, what do I care about whether or not I can walk for a while versus the health and safety of my baby?
Then they told me that if I didn't get up, I would risk getting blood clots. This is a valid concern, but pretty rare. I still argued with them though, and they ended up giving me heprin shots (a blood thinner that feels like a bad bee sting each time you get it!) twice a day. I had these really horrible golf-ball sized bruises up and down my arms and thighs due to these horrible shots.
But, things kept processing well. The baby was growing well (in the 70th percentile for size!) and was passing all of his stress tests with flying colors. Every week they would do an ultrasound and check to see if my water was refilling (sometimes a sac reseals itself!) but I never had water. Once we saw the baby pretending to drink (this is how they practice eating and breathing) even though we didn't actually see any fluid! We found out he was a boy and decided to call him Phineas (or Phinny).
The wall I stared at for almost 100 days while on bedrest in the Chicago hospital. So many episodes of Charmed and The People's Court were watched on that TV.
We also did daily stress tests for 30 mins, and the baby's heartbeat was checked every 4 hours. My heartbeat and temperature was also checked regularly, to look for infection.
At about 32.5 weeks, against my husband's advice (I will regret this forever!) I decided it was okay to start getting up to practice walking. All my doctors were begging me to do this (one lady actually kind of yelled at me!), and they said that the baby was really high in my uterus and they wanted his head to drop down to make a c-section easier.
So, finally I got up and started walking around. It was very difficult at first, as you can imagine, and I couldn't stand up for very long without my legs shaking. The next day I was able to walk up and down the hall, however, and all of the doctors were very pleased with my strength.
I also felt the baby's head drop down. Remember I had this big fibroid tumor and he was kind of jammed up in the top of my uterus while the tumor was down below him. But, once I started walking around, his head pushed down next to the fibroid, closer to the exit.
On May 14, at about 9:30 am, a nurse came in and told me that it was time for my daily stress test. This was not one of my typical nurses, who had all gotten used to the routine that I would have my stress tests in the afternoons, not the mornings (because I was still sick in the morning and the stress tests were unbearable when I was feeling sick). But, this nurse said that she had something else to do, so I HAD to do it now. I argued with her quite a bit because I was really feeling bad and I really wanted to wait a few hours.
"Seriously," I said. "I don't feel good this morning. If you do it now, I'll throw up."
"I'll get you a bucket then," she said. And she came back with the stress test equipment and a pink bucket.
So, I got hooked up and right away we noticed that the baby's heartbeat was very variable. It would go really fast and then slow down quite a bit. Normally some amount of variability is good, but this was too much - it was faster than it should be, then it was slower than it should be. They called in a doctor.
The entire time I thought for sure it was nothing to worry about. I felt fine, no contractions or anything, it must just be something strange. Maybe the baby was reacting to the fact that I had just gotten up and started walking.
The doctor, on the other hand, said that she wanted me to go to the labor and delivery area for monitoring. Just as a precaution, she said.
It took about 30 minutes to get me down there (I had to switch to another bed for transport) and when I got there they started monitoring me again.
This time, the baby's heartbeat was much faster. Then it started to slow down, and it went REALLY slowly. They called in a general surgeon that was on duty and he said it was time for delivery, the baby was in stress.
(Looking back, if that first nurse hadn't insisted I do the stress test in the morning and we had waited until the afternoon, the baby surely would have died!)
They also called my main doctor and it would take about an hour for him to get here, and he would do the c-section.
But, they kept monitoring me, and the baby's heartbeat just got worse. It went faster, and then slower, and then even faster, and then even slower.
I started to get freaked out, and I wasn't able to sit still. They gave me an oxygen mask, but I couldn't keep it on my face because it made me feel claustrophobic and panicked. Even when the nurse told me that I needed the extra oxygen for my baby - I still couldn't keep it on. I kept pulling it off and trying to put it back, but pulling it off again.
The baby's heartbeat again went super fast, and again it dropped down really slow. Then, it stopped.
After about 3 seconds, the nurses started rushing around and one put a stethoscope to my belly, desperately searching for the heartbeat. Maybe he had just moved out of the monitor's range?
After about 5 seconds, it started again, and it slowly started speeding back up to the frantic speedy pace. One nurse ran and got the general surgeon who was on duty to prep me for a c-section.
By the time he got there, the heartbeat was starting to slow down again. And again, it stopped.
When he heard it, he shouted, "That's it! Get her to the OR! NOW!"
They immediately wheeled me down the hall, all the while listening for the baby's heartbeat on the stethoscope. No heartbeat.
When we got to the OR, it had started again, climbing back up to a frantic pace. The baby was in stress, and, frankly, he was slowly dying. They would have to work hard to get in there fast enough to get him out alive. They started prepping me for surgery and the anesthesiologist started to give me an epidural.
During the epidural, the heartbeat stopped again. The doctor barked, "Just get it done!" to the anesthesiologist. At this point, he just inserted the needle directly into my spinal column. It worked, and I started to grow numb.
At this point they must have given me some serious drugs because I finally calmed down. Even though I still had on the oxygen mask and they tied my hands to the table, I no longer felt claustrophobic. I felt rather calm and relaxed, in fact. Even as I felt the heavy weight of numbness climb up into my chest, making it slightly more difficult to breathe, I still felt calm.
My doctor still wasn't there, but they decided to go ahead and try to get the baby out. The general surgeon started cutting, and I unfortunately he cut into my tumor while cutting me open. Fibroid tumors are very fleshy and full of blood vessels, and he must have nicked one because blood splattered everywhere. The plastic shield he wore over his face was dripping with blood, and he yelled, "She's hemorrhaging! I need blood!" in this desperate, panicked voice.
They started giving me blood transfusions, and the anesthesiologist who was monitoring me said that if I started to feel faint, I should let him know because that meant I was losing too much blood.
Finally, my doctor showed up. He is this older Palestinian man who had this calm, know-it-all attitude that I loved. The general surgeon starts updating him when he comes in, and my doctor goes, "It's alright. It's no problem. Everything is OK. Let's get to the baby quickly."
After a few minutes, they pulled the baby out. He was light blue and limp as the doctor pulled him out and handed him to a nurse.
Now, the risk at this point is usually lung maturity. If he is too premature, his lungs won't be developed enough to breathe and he would be in danger of having brain damage, or even dying. If he is not strong enough, he won't be able to cry.
So, the entire time I was in the hospital, I always told myself that when he was born, I would listen for the cry. If he cried out when he was born, he would be OK. If he didn't, I would be worried.
And, as the nurse carried Phinny over to a table where perhaps a dozen nurses and doctors waited, I heard him cry out for the first time.
It was a really cute moment because I heard this audible "Awwww!" from all the nurses as they appreciated the cuteness and importance of that little cry.
Unfortunately, though he managed a few weak cries, he wasn't breathing well and wasn't getting his color back. They bagged him (with a mask on his face and a bag of air that they would squeeze to force air into his lungs) and he cried a little bit again. (Again, all the nurses "Awww"ed at him!). But, then they had to bag him again.
After a few minutes, they told me he wasn't breathing well and they had to take him to the ICU. They showed him to me for perhaps 1 second before whisking him away.
Honestly though, I wasn't too worried because I had heard him cry (and, probably because I was so drugged up). I'm not sure why, but it HAD to be okay if he was strong enough to cry!
Also, I should say that another thing we were worried about were deformities caused by lack of fluid in the womb. The water serves as a cushion and helps the baby form correctly. Phinny never had any water though, so there was a risk some things might be misshapen. And, when the doctor pulled him out, the general surgeon said, "Is his head deformed?" (Hello, doctor? I'm awake, I can hear you!)
When they showed Phinny to me though, I couldn't see anything wrong with him!
Anyway, back to me. I was still hemorrhaging and losing blood fast. My doctor (the cool-headed one) says that they are going to do a myomectomy (where they surgically remove fibroids). This was very risky because a pregnant uterus looses blood quickly and I was already hemorrhaging. But, they had to stop the bleeding, so it was either remove the tumor (very risky) or remove my uterus (much less risky, but then I'd have no uterus, which would suck).
So, he starts doing this long, drawn-out, complicated surgery on my uterus. A little while after my first blood transfusion, I started getting dizzy and light headed, so they gave me another liter of blood. A little while later, I felt dizzy again, so they gave me another liter. They ended up replacing 4 liters of blood, or perhaps 80% of my entire blood volume.
Then another problem rears it's ugly head (as if things weren't going perfectly already!). I had only gotten an epidural, which lasts about an hour. But, they were in the middle of doing a myomectomy on a pregnant uterus, which is complicated and which takes a long time.
So, at some point, I start feeling my toes. So I say, "I'm getting some feeling back in my feet."
The anesthesiologist says, "We may have to put you under, so let me know before it starts hurting."
I didn't want general anesthesia though, so I decided I was going to wait as long as possible. So I felt my feet wake up, and then my calves, and then my thighs.
So I ask, "How much longer on the surgery?" and my doctor answers, "Oh, quite a while if you want it done right!"
At this point I can feel my butt on the table and I can feel some pressure in my abdomen so I ask for the general anesthesia.
"Okay," says the anesthesiologist, "it will take about 5 minutes to kick in."
Uh oh, I didn't know that. I thought it would be instant! So now I start to panic through the drugs they're giving me to relax. I could already feel the epidural waking up, and I could feel a slight stinging in my belly where they had me sliced open from bikini line to about 2 inches above my belly button, and with my uterus entirely out of my abdomen and sliced almost in half. That is NOT something I want to FEEL.
Luckily though, as soon as they put the mask on my face, I was out cold.
I woke up some time later in the recovery room with The. Worst. Headache. Ever. And, I had totally lost my voice and was soooo thirsty I could drink the ocean.
I whisper that I NEEEEEED water, and the nurse says I can't have any. I am only allowed ice chips. So I ate them, and then I ate some more, and then I ate some more. The nurse refused to give me more ice chips, and I actually tricked another nurse into giving me some, and then I threw up (I think the first nurse felt somewhat vindicated).
I slept on an off for a while, each time I woke up I'd ask if there was an update on the baby and if I could have more ice chips. I hadn't seen my husband yet and wasn't sure if anyone had even been able to get a hold of him. He might not even yet know that his wife and baby had almost died, and might die still.
My head was pounding anytime I would move it even slightly. I would actually see bright colored stars and funny shapes if I tried to sit up. And the pain in my head was so intense that it would make me throw up.
Then one of the baby's nurses came and told me that little Phinny wasn't doing too well, and I should go and see him now.
The thought of moving was so horrible and I was so sick that I said I couldn't go right now. I needed to rest. Perhaps she would get me some ice chips?
But she leaned over and said in a soft whisper, "I'm not sure if he will make it through the night, and I want you to meet your baby while he is still alive."
That worked, and I agreed to go. I don't remember too much about it, honestly, but when I first saw him there were just so many tubes and IVs that you could hardly see his face.
The first day
He had a handful of IVs going into his belly button. He had another IV going directly into his forehead and several pieces of tape covering it. He had this giant tube down his throat (he was intubated and on 100% oxygen) and it was taped to his face with a huge piece of white tape under his nose. He had another, small tube going into his nostril. He was in a state of medically induced unconsciousness.
They gave him a chance of survival at about 10%. And, within that 10% there were all kinds of problems that could occur (like cerebral palsy or blindness). So now after overcoming a 5% chance of having a viable baby, we had to overcome a 10% survival and after than we have to overcome about a 5% chance of being developmentally OK.
Anyway, I got to hold him, and it was great. I was shocked that he looked so big for a baby born 2 weeks premature and supposedly about to die. (He was more than 5 pounds!).
I held him for a few minutes and the nurse said that they had been trying to stabilize his blood pressure and heart rate, and while I was holding him everything stabilized for a few minutes! It was very cute.
Unfortunately, I still was feeling horrible and they didn't want me to hold him too long, so the meeting ended. I went back to the recovery room.
My husband (who was late because we lived so far away from the hospital) finally showed up and was able to give me infrequent updates on the baby. He was still in critical condition and on 100% oxygen, but he was still alive for the time being. He wasn't really responding well to anything they were trying to do for him, and he had almost no white blood cell count (so they weren't sure if he had an infection or if his immune system was just totally shut down).
Phinny lived through the first night though, which, according to the doctors, was a good sign.
My headaches only got worse though. I was not able to eat anything because I would throw up anytime I moved my head slightly. I just sat in my room with the lights off.
I tried to see the baby a few times over the next few days, but I think I only made it one time, and was only able to stay for a few minutes without throwing up.
I did, however, manage to give him a little speech that he needed to buck up and start fighting. "Get your act together, dude!" I said. "I need to get myself better, and so do you. So let's get to work."
The next day, his immune system spiked up to 32! The bad news was that this meant he had a raging infection, but the good news was that it meant he was finally fighting it!
Phinny in the neo-natal intensive care unit
My headaches were still totally unbearable. I would sit up all night moaning and calling for the nurse, who would give me another pill (of something, I don't remember what). The doctors said that they thought I was under a lot of stress, and that's why I was having the headaches. They sent in a psychiatrist to evaluate me, but she said I seemed OK. I was sad, but my baby was dying, shouldn't I be somewhat sad?
Then they finally asked a neurologist to evaluate me. Without even really asking me any questions, he looked at my chart and saw that I had had an emergency epidural that ended up with a lumbar puncture, and he knew right away that that was the problem. My spinal fluid was leaking out at the point of puncture and it was causing "spinal headaches."
So they gave me an IV of caffeine and within about an hour I was finally better! At least for a while, I head headaches on an off for a few weeks after that. I love caffeine! Since then, I have hoped that one day some company would invent IV caffeine drips for home use, but I have not found any.
The baby was still doing OK. He was taking two steps forward, and then a step back. One of his lungs collapsed, and they had to give him a chest tube (he still has the scar today). Once they had his lung re-inflated, his oxygen levels improved some.
Phinny on the ventilator. He's yawning!
Two different doctors gave me the very grave news that just because he has so far survived, it doesn't mean that we're out of the woods. His oxygen levels when we were born were at about a "2" for 24 hours, and with such lack of oxygen for so long, serious brain damage could occur. Plus, he was on 100% oxygen for more than a full week, which could cause blindness and other problems. He was at significant risk for mental retardation, cerebral palsy, blindness, heart problems and more.
He had been in critical condition on the ventilator and feeding tube (essentially, full life support) for a few weeks and wasn't showing terrific improvement. They thought perhaps it was because he might be too brain damaged to breathe on his own. They said that they were going to do an electroencephalogram (EEG) to check for brain activity. If the EEG showed no or little brain activity, they felt we should talk about taking him off life support. And, he would almost surely die.
The first EEG was inconclusive. Which was OK because we didn't have to have the discussion about life support. It was also OK because it didn't show any significant brain bleeds (which is a problem with preemies).
Days and weeks passed, and eventually Phinny slowly started getting better.
Here is an entry from my blog:
But let me get to the fantastic news. Phinny is doing GREAT!!!! He came off the ventilator last weekend and has been getting better ever since. He's getting breastmilk now through a feeding tube, and he's off almost all of his medications. He still has some breathing help (a CPAP) but I don't think he really needs it, and I bet they take it off in a day or so. Honestly, he pulls it out all the time, so pretty much any time he's awake he's not on it! The nurse even let me take it off just to take his picture, so obiously her feeling was that it isn't TOO necessary. He will probably be able to come home in a week or so, maybe sooner. Before he goes home he needs to be able to breast/bottle feed (which means he needs to know how to suck and swallow while still breathing) but he already can suck on a pacifier while breathing (the nurses gave him one) so I don't think that will be a problem!
I had been struggling with this feeling that I wasn't really connected to Phinny. We didn't really go through the bonding thing, you know? However, when his ventilator finally came out and his sedation was turned down and he started to move and cry for the first time, my heart totally exploded! Now I can't stop thinking about him.
He's so cute I could practically eat him. I want to play with him all the time. I soooo wish he was here with me.And I love all the different cries he makes. I haven't heard a real ANGRY cry yet, but he has all these different levels of protest already. He has like a weak, "Ehhh" sound when he's just barely awake but he is slightly upset. And he has a short, quick, "Waah, ehh, hmm" when he's being movied or is irritated. Then of course my favorite, the loud but still calm, "Wah, wah, wah." Just letting you know I don't like this, but I'm not throwing a fit - YET.
And I love his hair. Right now it is medium brown, and it is the softest texture I've ever felt. Rubbing his head is like touching a cloud. There are a few spots on his head where they shaved it in order to put in an IV, so at some angles he looks quite punk rock. But I'm sure it will grow back into the old balding man pattern he had before.
And now when he's asleep I can see him dreaming. He was too zonked out to dream before, I think. His eyes roll around behind his eyelids and he twitches and makes sucking motions. I wonder what he's dreaming about? He can't be dreaming about eating since he's never actually eaten before (only through a feeding tube)!
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Finally, after six weeks in the hospital, he was allowed to go home.
He never had premature longs (as initially suspected), he just had a really bad infection and he was so close to dying that his heart and breathing had almost stopped!
The good news is that once he got over the infection, he has really had no problems at all!
He came home with us around his due date, and didn't need a feeding tube or an apnea monitor or anything.
Now, he's 20 months old and is in perfect health and is actually a few months ahead developmentally. He talks and walks and does on the little toddler things you would expect.
He did end up with a little dent in his head, and a little bend in his leg, but all of the doctors feel that it will improve greatly as he grows up. And, I can tell you that it has! He looks totally normal now.
He's even in the 70th percentage for height for his birth date!
We're so very lucky to go through all of this and have a perfect, amazing, beautiful child. We thank our lucky stars every day for such a miracle.
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