Saturday, December 10, 2011
The likelihood of Placenta Previa persisting until term is something like 3%. I was pretty convinced it would resolve itself. None the less, I read up. I did my homework. I knew what the consequences could be. So when I woke up on April 29th – just 35 weeks and 4 days – bleeding, I knew we needed to head to the hospital. I had a feeling this baby was coming. We were lucky. They held out a few days. They wanted 36 weeks. As I spent my weekend in hospital, I spent my time googling…how bad could a 36 weeker be? It wasn’t that premature after all.
Respiratory problems…that was the brunt of what we could expect, if anything. So it wasn’t any surprise when they pulled our baby girl Maura out that she needed to be resuscitated. She didn’t cry. It took a minute or so. It seemed more like five. Overall, Maura was pretty good. They took her to the NICU just to keep an eye on her, but after a mere 4 hours, they brought her to me, and I snuggled down and tried to nurse.
For two days, things were normal. I was recovering from my cesarean section, and Maura was coming along fine. After being in limbo for a few days, it was quite a relief that there weren’t any other issues. I was ready to get out of there. I wanted home. The doctors all gave the OK for us to head out with one last stipulation – the car seat study. While Maura weighed in at 6 pounds 5 ounces, she was still a preemie by definition. Hospital policy required all preemies to take the car seat study. So I nursed Maura and changed her. She scrunched up her face as if to cry, but then settled back down. They took her off to be tested.
Joe and I waited for her, packing up our things. I took a short video of our hospital room as we were the first to use it in the new wing. Joe asked if he should head to the car.
“Just wait,” I’d said. After having to leave our son due to his bilirubin levels when he was born, I was just a little superstitious.
When her test was over, the neonatologist came to see us. Maura had failed. She would not be able to go home. She had an “apnic” event. I felt as if I was being swallowed down a hole. This couldn’t be happening to me. Everything was fine. She was fine. They were going to keep her overnight for observation in the NICU.
For two days, we watched Maura slide downhill. These apnic events became seizures. She was stripped of her newborn clothes, hooked up to monitors, and stuck with an IV with three antibiotics and phenobarbital. I remember the first time we walked out of the NICU. My husband cried. I promised him it wasn’t for long. This would all be a blur. Little did I know.
On Friday morning, I walked in to see her. She wasn’t in an incubator anymore. She was holding her own, swaddled, sleeping. Things were looking up, or so I thought. The neonatologist came to talk to us. She said that if ever there was a time she wanted to transfer a baby to a better hospital, now was it. She mentioned Childrens Hospital in Philadelphia. It was all happening so fast. They were taking my baby…to another state…to another hospital…and she wasn’t coming home.
Maura was transferred that afternoon to CHOP. It was such a foreign place at the time. Directions to get there, where to park, where the NICU was…we had no idea we’d soon call CHOP home for quite some time.
Everyone knows NICU babies have rules. These rules are given to them by the doctors. They have to be off C-Pap before they can nurse, they have to breath on their own, hold their own core temperature, all those rules. Some babies are feeder-growers – just gaining weight and growing in womb like environments. Maura was a feeder-grower most of the time. I liked to call her “Regular Baby Maura”. I’d arrive at the NICU with my milk cooler at around 8 in the morning. We’d spent our days snuggling. Then there was the darkside – the seizures.
You see, Maura has epilepsy. By definition, it means two or more unprovoked seizures. They thought it would pass. It wasn’t uncommon. They called it benign neonatal seizures. It was commonly controlled with phenobarbital so of course, this was the first course of treatment. Maura was resistant. They added Keppra which helped. Maura’s seizures stopped, and they sent her home after 17 days. We were kidding ourselves to think she was ready. She was so tiny in her carseat. She weighed less than 6 pounds at the time. She was still so helpless.
Three days later, she was seizing again. There were three at home. On the third one – when she turned blue – cyanotic – we brought her back. I felt so embarrassed. I couldn’t take care of my baby. I thought she was ready. She was far from it. There were several more that night. They were by no means under control. There were new rules. She wasn’t your run of the mill preemie. She had something to prove. Maura could have no more than 3 seizures a day (because after all, she was going to have them) and she couldn’t turn blue and need c-pap.
Every night before I went to bed, I’d call the NICU. The nurses were always so nice. They’d share every detail and wish me a good night. She often had good evenings – time usually not spent with us while we spent it at home with our toddler. It was the mornings that we’d wait with baited breath. I never called in the morning. It was motivation to get up and moving faster….to drive the 45 minutes to CHOP…to walk up to the NICU…to get her overnight update. It was usually then that I’d be let down. Her seizures liked to strike at night. I’d run the numbers in my head – Maura was far from coming home.
Maura continued to baffle the specialists. Why were her seizures happening? Why hadn’t they passed on? What would they need to do to help her? They continued to dig deeper for answers. At one point, they even sent the geneticists to see us – to research incredibly rare (like less than 5 cases world wide!) disorders. It was quite scary at times.
One of the neurologists that had stopped in to see Maura in passing had mentioned Topamax. It was another seizure medication. Little did they know how much I’d research it. It was a different kind of drug. It didn’t react with the inhibitory reactors of the brain, it reacted with the excitatory reactors – a different approach – an option that I pushed for Maura for days before they finally gave the OK. It wasn’t approved for use in newborns, and I’d need to sign off on it. Maura’s seizures stopped nearly instantaneously. It was our miracle drug.
I started calling the NICU in the morning. I found the faith I needed to believe this was it. And every morning, I reveled in the news. Maura was seizure free. The meds were working. Maura was given a new rule: If she could stay seizure free for five days, they would send her home. I knew this was it.
After 35 days, Maura was released on three anti-seizure medications. 35 of the longest days of my life. I never thought that a 36 weeker would spend 35 days in the NICU. She had other plans for us.
Maura has been seizure free for just more than 3 months. Do the math – as you can see, there were other seizures at home through the summer. Her medication levels were adjusted easily by phone and email, and we never brought her back to the NICU except to visit, of course! She is currently down to two anti-seizure medications, as we look to wean off of one in a few months to narrow her to just one medication. While 6 weeks in the NICU sleeping caused quite a bit of low tone, Maura is thriving with the help of Early Intervention and a lot of love at home.
Summer as going very well and I was enjoying being pregnant (for the most part). I was lucky and was able to take vacation from work 1 week after the 4th of July so I had a nice relaxing two weeks off from work. The first day following vacation, I returned to work (veterinary technician). I had noticed around 10 am that morning that my lower back had to started to ache a bit. I figured this was the beginning of aching, tired portion of 3rd tri and didn’t think too much about it. I took some Tylenol and went on about my day. Around 11:30am, I noticed that the Tylenol wasn’t helping much so I tried sitting/standing different positions to no avail. I called my OB at this point to see if they had any suggestions or if there was anything else that I could take. While talking to the receptionist, she put me on hold and came back a few minutes later and said that my doctor recommended that I come in and get checked to make sure I wasn’t dehydrated. So, I went on my lunch break (her office is right across the street from where I worked) thinking it would be a quick appointment. I showed up, they put a fetal monitor on me and we came to find out that I was having contractions every 2-3 minutes. Next thing I know, I’m hooked up to an IV and having my cervix checked with luckily no change. Andy came from work and we sat at the hospital for about 8 hours. During that 8 hour hospital visit (which was my first visit EVER to a hospital), they gave me two bags of fluids in about an hours time (man did I have to pee!) and terbutaline to stop the contractions. The terb. wasn’t too horrible, it did make my heart race a bit (it could have also been the surreal situation that we were in at the time, we were both slightly nervous about what was happening). This is one of those situations in which my personality really shows through…I can honestly say, even though we were sitting in the hospital, I wasn’t too worried. I didn’t really know at this point that this was just the beginning. I just thought it was a fluke.
I was sent home from the hospital and told to take it easy until I see my OB. When I saw my OB later that week, she put me on modified bed rest and told me to stay off of my feet and to watch for contractions of 6 or more in an hour. If they came back, I was to return to the hospital.
Saturday rolled around and I was watching TV when I noticed I was having contractions again (now I knew what they felt like) and was having about 8 in the hour that I had counted. So, back to the hospital we went. This visit, started like the last, the fluids, the terbualine but the contractions wouldn’t stop. I was kept over night since the Terb. wasn’t working and they had to give me mag sulfate. Magnesium Sulfate is a nasty drug. It is very effective in stopping contractions but it makes you feel horrible. To quote drugs.com: “The adverse effects of parenterally (IV) administered magnesium usually are the result of magnesium intoxication. These include flushing, sweating, hypotension, depressed reflexes, flaccid paralysis, hypothermia, circulatory collapse, cardiac and central nervous system depression proceeding to respiratory paralysis.” Great stuff, huh? I felt hot and very sick to my stomach. I had to be catheterized (urinary) because I wasn’t allowed to walk.
The next day was worse because it left me with a horrible headache. The urinary catheter was the WORST part of my whole pregnancy experience. I’ve never felt so much pain or so dehumanized.
That evening while in the hospital, my OB was on call and she came in to talk to me. I totally lost it that point and ended up balling on her shoulders while she told me everything was going to be ok. They checked me and my cervix was thinned to 1.8cm when it should have been around 3.8-4cm. The next morning I was sent home on strict bed rest and I was to have a cervical U/S on Tuesday. Tuesday came and I had my cervix checked. I was 1 cm dilated. I hadn’t had any contractions since Saturday so, strict bedrest was the plan.
In the same evening that I had the cervical ultrasound, I got up to make hamburger helper (figuring it was just a matter of throwing some hamburger in a pan). I made dinner and Andy came home. After dinner, I got up to go to the bathroom and I felt a warm small trickle. I honestly thought I just tinkled a little bit. I decided to go to the bathroom to empty my apparently over flowing bladder and I got a shower. While in the shower, I felt that same small trickle again. I got out, called for Andy and sat on the toilet. As soon as he came in, I trickled again and he heard it. Then we knew. My water had broken.
In a flurry, we jumped in the car and were on our way to the hospital. It didn’t really sink in until I walked up to the desk in the ER and had to tell the lady at the desk what happened. Next thing I know, I was in a wheel chair going up to L&D.
Again, like the previous trips, I was put on an IV, fetal monitor and given Mag Sulfate (here we go). The next day, I spoke with my OB. The hospital that we were currently at had two issues. The first issue was that their NICU was completely full and second, it was only a level II NICU. We decided that it was best that I get moved to Riverside in case I delivered sooner rather than later so that the baby wouldn’t have to be moved after he was born. I was transferred to Riverside via ambulance. It is very strange to feel so helpless.
From then on, I sat in the hospital for 5 days on every antibiotic known to man trying to keep the baby cooking. Sitting in the hospital was horrible. I wasn’t allowed to get out of bed, I was being checked every hour, and it was very lonely. Andy came to visit and stayed with me as much as possible, but hospitals are very lonely places. I was also poked a million times (I had 9 different IVs because my veins are so bad, plus the heparin shots in my legs, the steroid shots for Cam’s lungs, etc). Our goal was to make it to at least 32 weeks.
The day I went into labor, one of the doctors I worked with stopped by to bring me some goodies and to visit. While she was there, it happened to be time to be put on the fetal monitor. We chatted and were interrupted by the nurse coming in…The nurse said that my heart rate was elevated and she asked if I was ok. I felt fine. Then she told me I was having contractions again (which were off and on during my hospital stay anyway). They checked my cervix…I was at 2cm. It looked like I was officially going into labor and they wouldn’t stop it this time. I was taken from the high risk floor and moved to L&D.
Our birth plan was to do things naturally. I wasn’t officially sure as to how this would work with Cameron being a preemie. I wanted as little intervention as possible. I was already hooked up to an IV so not having one was out of the question. We had my dad and stepmom in the room, Andy’s mom was on her way up from Cincinnati so, it would be a while before she arrived.
I was able to labor for 9.5 hours med-free. I think I did pretty well seeing how we didn’t get to make it to our scheduled birth classes. I think that having my family in the room with me was a bit distracting. The labor was also made more difficult due to the nurse I had. She was not nice at all and I really should have asked for a new one. My dad at one point wanted to tell her off (adding to my stress). She kept asking me if I wanted an epidural and at one point asked me why I didn’t want one. What did it matter? It was my choice. I was checked at the 9.5hour mark and was still only at 2cm. My contractions during that time were hitting 97% on the monitor and I was in a lot of pain. Since I wasn’t progressing and Cam had begun to become slightly distressed (heart rate decelerating during contractions) they started me on Pitocin. At that that my contractions were no longer bearable so I asked for the epidural. I can imagine that nasty things my nurse was probably saying to other people after I finally gave in…. As for the epidural itself, what a BIG difference! After the epi, my dad said I was the happiest person he’s ever seen in labor (weird?). I was able to rest and a few short hours later, I was at 10! (I got very lucky, a Cesarean was the last thing I wanted). My epi didn’t take as well as they do with most so I was still able to feel the urge to pee (at which the nurse didn’t believe me at first) and also felt Cam move down (hard to explain the feeling). I told the nurse what I felt and she checked me, his head was right there!
The doctors had me deliver Cameron in a surgery suite just in case things got difficult. It took a total of 4 pushes and he was out! He was 2lbs 15oz and 15 1/2in long (gestation 30weeks 1 day). He needed just the CPAP to help him breathe (thank you steroid shots) and was taken to the NICU. I didn’t get to hold him after he was born like I had planned, but I did get to touch his little fingers before the NICU team took him away.
A lot of what followed was a blur. Cameron was born at 2am and I didn’t get to sleep until about 5am. I was exhausted and starving. I was also VERY thirsty. They wouldn’t let me have much to drink during or after the delivery because they were afraid I would get sick. By the time we got back to my room, I was parched! The nurse finally gave in and let me drink 8oz of juice. Juice had never tasted so sweet! After I pumped for the first time (more about that later) I was finally able to sleep. We slept for about 3 hours and were up at 8am with the nurses checking on me and bringing me food. Shortly thereafter, I went to officially meet Cameron for the first time.
Cameron stayed in the NICU for 39 and came home the first week of September. He was born July 25th 2010. His due date was October 1st, 2010.
Thursday, December 8, 2011
My story isn’t on the list of birth stories on this site. Even though my baby is almost 9 months old, I cannot write it out. Every time I try, it reads “The day you were born was supposed to be the happiest day of my life. Instead it was the scariest…but in the end it brought us the most precious tiny baby in the world.” At that point I usually break down crying and have to stop.
Even so, I relive the day she was born in my mind several times a week. The scenes from her birth, the early days in the NICU, and the intense love and fear I felt for my baby seem to play on a constant loop in the back of my mind. I am a preemie mom with Post Traumatic Stress Disorder and Post-partum anxiety (PTSD and PPA). And there are many others like me.
My PTSD and PPA didn’t show up right away. In fact, my daughter was almost 5 months old before I realized I was dealing with more than I could handle on my own. While we were in the NICU, I was so focused on Cora that I couldn’t begin to process my own emotions. I couldn’t even tell you what it was like to recover from my c-section and that was major surgery. I didn’t pay attention to anything going on with me. The first couple months we had her at home, it was all I could do to manage her therapies, appointments, feedings, etc. But once things began to settle, the emotions and the stress of the previous five months came crashing down on me all at once. Unrelenting. And it turned me into a person I didn’t like.
I found that on the days I was supposed to be working, I spent all my time researching preemie issues. Even preemie issues that Cora didn’t have, just so I would know what to look for in case someone missed something. I felt (and sometimes still feel) like all the responsibility for taking care of her, ensuring that she had every need met, and diligently watching for any signs of problems fell squarely and soley on my shoulders. As a result, I couldn’t think about anything else.
I was edgy. Oversensitive. Unable to sleep well even on the rare nights that Cora slept for long stretches. I couldn’t get past the fear that something else was going to happen to her. That I might miss something. That she wouldn’t get everything she needed. And it would be my fault.
I felt like I had already failed her by not being able to maintain the pregnancy. After her birth I was diagnosed with cervical incompetency. Because knowing that my body failed my baby wasn’t enough….it also came with the label “incompetent.” While rationally I know there was nothing I could do, nothing anyone could have done in my case to maintain the pregnancy any longer, I still struggle with that guilt. And the pressure to not ever let my baby down again.
My friendships suffered. My relationships with family suffered. My marriage suffered. My ability to be the kind of mom I want to be suffered too.
So I talked to my OB. I met him the day he delivered my daughter and he has been amazing ever since. He gave me the names of several therapists and I went searching for the right fit.
First I tried a group setting through the hospital I delivered at. That was a bust. The topics were more about PPD (post partum depression) and everyone there had term babies. It was a great group for those women. But not for me. There wasn’t much I could relate to. So I moved on.
Several attempts later, I found the right counselor. I now see her every week and it is helping a lot. She is helping me learn to manage my anxiety and to clear my mind of thoughts that aren’t helpful to me or to Cora. She reminds me that I am a good mom, that I have a healthy baby, and that I will get past this. It is slowly making a difference.
Its important to know that my preemie story isn’t one of the scariest. Cora was a remarkable 27-weeker. She needed limited O2 support, faced few complications, and impressed the doctors at every turn. Compared to many people in our situation, we had an easy ride. That didn’t make it any easier for my emotions. I still don’t have it all figured out. There are good days and bad days. I find that when I get more sleep, get to exercise, and eat well things go better. Of course there are many days when those things aren’t possible.
But when I feel myself sinking into a pattern of anxiety or reliving the events of Cora’s birth, I remind myself “This is not helping my baby. This is not helping me. There are more important things to focus on. Look at that healthy, beautiful, strong little miracle and focus on her instead of reliving the trauma of the past.” Sometimes it works.
Tuesday, November 29, 2011
As a preemie
mama, one of the things that has plagued me over the last year was my inability
to carry my daughter to term. I
developed severe preeclampsia and IUGR, and had to deliver at 29 weeks 2 days. 4 months later, we received another blow when
Judith was officially diagnosed with a life-shortening, chronic, and
potentially life-threatening lung disease: cystic fibrosis. My husband and I knew from the start of
Judith’s life that we wanted to do what was best for her, much like any parent
would. Part of this plan included a
crucial element: vaccines.
Since preemies can be prone to complications from many different diseases, vaccines are an important part of their care. It’s not just the standard vaccines that all children should get (think Hepatitis, polio, MMR, etc.) - it also includes critical vaccines against the flu, and against RSV. Just like with adult vaccines against the flu, children can still get the flu (and yes, even RSV) even though they received the shot; the crucial element is the vaccine will prevent the virus from growing, and will help lessen the severity of the virus. In some cases, it could make a difference in treatment, and could help keep the little one from landing back in the hospital (granted, there are exceptions to everything). It’s one more step preemie parents can take to protect their child/children.
Many pediatricians will vaccinate a preemie based off of their actual age. I remember having this discussion with our pediatrician and our neonatologists; they explained to me that they vaccinate preemies this way to help give their immune systems the protection it needs from these harmful diseases. After receiving that information, I had a decision to make with my husband about how to approach vaccinating Judith: did we want to follow the standard vaccine schedule, or did we want to follow a delayed schedule? I know a lot of preemie parents who choose/chose to follow a delayed schedule, and work with their pediatrician to set something up. I also know a lot of preemie parents who follow the standard schedule, and I know many preemie parents who mostly follow the standard schedule but will delay a couple vaccines. Personally, we follow the standard schedule with modifications: our pediatrician will not overload Judith with too many vaccines at once, but she will receive the vaccines within the recommended time frame. That’s just our decision though - every preemie parent is different, and they need to follow a schedule they are comfortable with.
I know this isn’t a lot of information; the best source of information is your pediatrician, and they very well may recommend something different than the information I received. Work with your preemie’s doctor, and figure out what will work best for your situation, and what you would be comfortable with. Together, you and your doctor can help give your little miracle the extra protection they need!
Since preemies can be prone to complications from many different diseases, vaccines are an important part of their care. It’s not just the standard vaccines that all children should get (think Hepatitis, polio, MMR, etc.) - it also includes critical vaccines against the flu, and against RSV. Just like with adult vaccines against the flu, children can still get the flu (and yes, even RSV) even though they received the shot; the crucial element is the vaccine will prevent the virus from growing, and will help lessen the severity of the virus. In some cases, it could make a difference in treatment, and could help keep the little one from landing back in the hospital (granted, there are exceptions to everything). It’s one more step preemie parents can take to protect their child/children.
Many pediatricians will vaccinate a preemie based off of their actual age. I remember having this discussion with our pediatrician and our neonatologists; they explained to me that they vaccinate preemies this way to help give their immune systems the protection it needs from these harmful diseases. After receiving that information, I had a decision to make with my husband about how to approach vaccinating Judith: did we want to follow the standard vaccine schedule, or did we want to follow a delayed schedule? I know a lot of preemie parents who choose/chose to follow a delayed schedule, and work with their pediatrician to set something up. I also know a lot of preemie parents who follow the standard schedule, and I know many preemie parents who mostly follow the standard schedule but will delay a couple vaccines. Personally, we follow the standard schedule with modifications: our pediatrician will not overload Judith with too many vaccines at once, but she will receive the vaccines within the recommended time frame. That’s just our decision though - every preemie parent is different, and they need to follow a schedule they are comfortable with.
I know this isn’t a lot of information; the best source of information is your pediatrician, and they very well may recommend something different than the information I received. Work with your preemie’s doctor, and figure out what will work best for your situation, and what you would be comfortable with. Together, you and your doctor can help give your little miracle the extra protection they need!
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