My story begins on April 25, 2012. I was 30 weeks pregnant and going to a regular doctors appointment, I had just switched over to going twice a month. Aside from my feet being a little swollen and my fingers being numb, I was feeling pretty good and was excited about signing up for a few classes (childbirth, breastfeeding) to take in the next couple of weeks. 

My husband was working and this was going to be my first time going to an appointment without him, but he got off early at the last minute. Everything was going fine until the nurse took my blood pressure. It was 148/80. My blood pressure had been perfect my whole pregnancy, and was actually usually low. They tried my other arm and it was still high, so she left to go get the doctor.

My doctor comes in and starts asking if I've had any headaches and says he wants me to go over to the hospital for some monitoring and blood work. Then the nurse comes back and says there was +4 protein in my urine and the doctor warns me that I may be spending a few days in the hospital. 

I've never been in a hospital so this kind of scared me, and I was worried about my job and my dogs at home, so I'm sure I wasn't helping my blood pressure. When we arrived and they tested it again it was something crazy like 180/110. I started trying to relax but it only went down to around 160/100 and it stayed there for a few hours. 

While still in the triage area, they did an ultrasound. I noticed when they would measure the length of the baby's bones and size, it would list it as weeks... And everything kept coming up as 27 weeks. The nurse said everything looked good, but then looked at my chart and asked how far along I was. When I said 30 weeks she said the baby was small and that she needed to get a clear picture of the umbilical cord. I had no idea what any of this meant but this was when we finally called my family and my job to let them know something was going on.

After the ultrasound I had an IV placed in my arm and they started me on magnesium sulfate. I was finally put into a room and started a 24 hour urine collection. My mom had just arrived with some of my stuff when the doctor came in and dropped the bombshell.

He said that he would have to see my blood and urine work first but that he could pretty much guarantee I had severe preeclampsia. The umbilical cord had been affected and the baby was IUGR. I would not be leaving the hospital until she was born, and they wanted me to make it to 32 weeks. 

I was completely stunned by this. I think mostly because I still felt perfectly fine. The magnesium started kicking in at this point, and that stuff is awful. I spent the next week on it, feeling like I was burning from the inside out. I couldn't really concentrate on anything, even when people came to visit I couldn't completely follow a conversation. All of my test results came back and sure enough I had preeclampsia. A nurse from the NICU came to talk about what I could expect. As everyone reading this has probably heard, she told me girls do better. She also told me that preeclampsia babies also usually do better. I thought that was really interesting, she said that it was almost like your body knew something was wrong in the beginning and it helped develop the baby faster. She explained that the baby would likely need some kind of breathing assistance and would be in the NICU until around her due date.

Every morning I would have an ultrasound. They looked at the poor blood flow in the cord, they measured the baby's movements, and they watched for her to practice breathing. I received both steroid shots. The baby was moving less and less, but a couple days after being there they did see her "breathing" in the amniotic fluid. 

Instead of making it to 32 weeks I made it five days. On Sunday night I started having a weird pain in my side/stomach. Then I woke up in the middle of the night with the worst headache I have ever had. When the nurse came in for my nightly 3:00 am blood draw, I told her about the pain and she brought me some medicine. I lay there for hours feeling so sick, I could tell something was going wrong. 

Around 7:00 my new nurse poked her head in and told me not to order breakfast or eat anything. That's all she said, but I knew. I called my husband and my family and told them it was c-section time. The nurses came in and said that my bloodwork had shown that I was developing HELLP syndrome, and at that point the baby has to be delivered. 

My husband got there just in time and they started the c-section. The epidural did not feel at all like I expected. The feeling of them digging around for the baby felt a lot worse than I expected, but maybe that's just because I was imagining it and it creeped me out!

Then at 9:09 am on April 30, 2012 I heard the squeakiest little cry ever. My so far unnamed daughter was 2 lbs 7 oz and 15 inches long. My husband went to be with her and told me that she looked tiny but good. On their way out they let me give her a kiss and all I saw was this teeny little wrinkled gray face. I was brought into recovery and my husband came to update me and he had a picture! She was on CPAP for just 30 minutes or so before being switched to a nasal cannula. She was absolutely the most beautiful thing I'd ever seen, and I spent the hours in recovery staring at her picture on my husband's phone. 

Before taking me to my new room we made a stop in the NICU so I could see her, and it shocked me. When wheeling my bed up to her isolette I seriously thought they had the wrong baby. There is no way to even imagine seeing a baby that small in person, only people who have been in the crazy world of the NICU can get it. The nurses assured me that she was doing great, but this is when the guilty feeling started creeping in. One I'd feel again and again with every heel prick and IV insertion and NG tube placement. 

The next morning they had me up and walking and I was able to go down and hold her for the first time. The next day she was able to come off the cannula, and I got to do kangaroo care with her, which was wonderful. She started having some digestion issues and it took a while to get her past taking more than 3 cc's of breast milk every three hours. Before every feeding, the nurse would suck out contents of her stomach and the milk would still be there. They said it was probably an effect of the magnesium I was on, and after a few days she finally stared digesting better. It took her about two weeks to get back to her birth weight and around the same time they were able to take out her PICC line they'd put in after she constantly yanked IV's out of her arms, feet, and even the top of her head!

Finally when she was two days old we named her. We went in to the hospital having no name ideas that we both liked at all, and then one night heard the name Cora on the TV. I mentioned I liked it and was shocked when my husband did too! I felt like it was too rushed so I wouldn't completely commit to it. But after a few days she definitely seemed like a Cora and so she finally had a name!

Because of the HELLP it took awhile for my platelet levels to return to normal. I had been in the hospital for about a week now and instead of feeling desperate to leave, I started to dread it. When I was discharged a few days later, it was one of the saddest days of my life. They wheeled me down to the curb to wait for my husband and the car and I tried not to look at the women in the wheelchairs beside me, holding their babies. I held a container of breast milk and this little blanket I was carrying around to leave with Cora with my scent on it. My husband picked me and all of my stuff up, we re-parked, and went back up to the NICU for awhile. Finally leaving was devastating.

But soon we got into a routine. Cora slowly gained weight and after a few weeks we started breastfeeding. She did great at it right from the beginning. They would weigh her before and after and once she got the hang of it she'd consistently take in way more cc's than she was taking by bottle. Around 4 weeks old they tried out an open air crib but she only made it about two hours before she was too cold. I went in a week later, excited to try again, and found everything in her room covered. There was a caution sign that said that a gown and gloves must be worn before entering. A nurse came running over and explained that Cora had tested positive for MRSA. The only thing I knew about MRSA was that it was hard to treat and that people died from it. 

The nurse quickly made sure I knew that this was really no big deal. She didn't "have" MRSA, her nose was colonized with it. It's very common in a hospital and she probably got it from one of the nurses or doctors. I could still breast feed and hold her skin to skin, but I'd have to wear gloves. If it wasn't hard enough changing her little diapers sideways through portholes avoiding wires with numb fingertips (from pregnancy caused carpal tunnel), adding gloves just made it that more fun! The nurse also gave me the good news that she was going to go ahead and remove the NG tube because of how good Cora had been with eating, and literally as she was saying this Cora yanked out her own tube (for the millionth time)!

That night we tried the open crib again and it worked. I went in the following morning as Cora's doctor was looking at her and heard the magic words, "Go ahead and bring the carseat in..." She passed her carseat test within the next few days and on June 11th I got a call in the morning saying she was ready to go! She was exactly six weeks old. 

The car ride to get her was so exciting, but it took hours to get her out. There was multiple papers to sign and we set up follow up appointments for eye exams and Synagis. Then the nurse just kind of said, "Okay, you can go ahead and take her leads off..." We peeled them off, and out we walked. 

I am writing this on April 25th, 2013. Exactly a year after that fateful doctor appointment. Cora is a few days away from being one, and doing great. Aside from being small for her actual age, she has no side effects from being born nine weeks early. I, on the other hand, have never felt the same. I feel like I came out of the hospital a different person, but not necessarily in a bad way.  Cora is the best thing that ever happened to me and I wouldn't change anything about her story even if I could!

All was well in the first trimester.  Threw up a lot (until 25 weks), but otherwise fine.  But then I had my NT scan and started having tons of cramps afterward.  My ob put me on bedrest for 2 weeks.  I was allowed to go back to work afterward for 3 half days per week.  All was well for a month.  Then at 17 weeks, I started spotting.  Went to the ER against my better judgement (husband mae me all the after hours nurse and she wanted me to go in... sigh), and was diagnosed with a placenta previa.  Was put on bedrest again.  I spotted brown off and on for about 6 weeks.  At 24 weeks, I woke up bleeding.  I spent 3 days in the hospital and was finally allowed to go home, this time on strict bedrest.

At this point, I knew I was in trouble.  I'd been followed by the MFM since 6 weeks.  He didn't want me going past 38 weeks. But now I had a feeling I wouldn't even make it to 36.  With a heavy heart, I got out the preemie clothes. We had tried to not know if we were having a boy or girl, but the tech for our fetal echo was sloppy and I saw a scrotum.  We had fetal echocardiograms every 4 weeks due tot he risk of heart block Bradley had from my Sjogren's.  I never left my bedroom, except to go to my doctor's appointments.  And then at 26 weeks, I bled again in the middle of the night.  Again, I didn't want to go in, but my husband and the after hours nurse made me.  I went to the hospital I thought I was delivering at, which was 5 minutes from our home.  I was admitted for observation, started on magnesium (again), and this time given a steroid window.  When my doctor saw me later in the day, he said that I needed a higher level of care and was transferring me to a hospital with a level 3 NICU (we were at a level 2EQ).  So, to my embarrassment, I was transported by ambulance.  As a resident, I hated transports, and now I was one! The new hospital was about 12-15 minutes from the house. I was grouchy because the doctor told me I'd be there for the duration of my pregnancy.  I got settled in my room and woke up around 6am literally gushing blood.

I called my husband, who seemed to instantaneously appear, even after having dropped our son off at a friend's.  I was rushed from antepartum to L&D.  Fortunately, Bradley behaved himself and my bleeding slowed down.  My stepdad even drove up from out of town because he was worried.  From that point, I never argued about staying in the hospital.  I tried to be patient and just let things roll.  I bled off and on and did crafts.  My husband and 3 year old visited 1-2 times a day (my husband is a stay at home dad), which kept my spirits up.  I had few other visitors, which suited me fine, as they stressed me out.  No one understood that I had to be there.  That Bradley or I might die waiting fro an ambulance at home if the blood came again.  That Bradley might be brain damaged if such a thing happened. That Bradley might die. I watched a lot of trash tv on Netflix.  Lots of movies.  I continued to crochet and cross stich little bibs.



My ob actually came out of his uber-conservative shell and was going to let me go back home after having a steroid booster.  So I got one shot on Friday afternoon.  That evening, my boss from work came by, which was nice.  No one was with me because it was expected I'd come home the next evening, so the company was appreciated.  Well, I went to sleep.  Woke upi around 6am 9/22 to the feeling of gushing blood and was rushed to L&D.  My husband arrived eerily fast once again.  This time my mother-in-law had come to help out, so no arrangements for childcare had to be made.  Well, the bleeding slowed, but didn't stop.  I was 4cm, laboring.  Bradley looked wonderful on the monitor, so I labored. I got my epidural right away-- I've never had any illusions about my pain tolerance.  I feel epidurals were a marvelous invention, but if you feel the need for pain just because cave women did it that way, so be it.  So I got the epidural and my contractions slowed down.  I was 6cm for hours.  They broke my water, and still no change.  Pitocin was started and about 30 minutes later, I was in excruciating pain and needed to push.  My epidural, it seemed, was not working.  At all.  My doctor was not on call.  His backup was at her house.  The hospitalist was moseying along or something because she did not arrive instantaneously like I wanted.  She got her gown and gloves on ever so slowly.  I pushed and I knew exactly what my patients meant when they said they couldn't push.  I felt paralyzed by pain.  Next contraction came.  I pushed.  Then I cried and somehow he was born in about 4-5 minutes of pushing.  Thank God for that.  He was born at 11:53pm on 9/22.  7 minutes before I turned 34.  My best birthday present ever.

He was beautiful.  My first words were, "He's so big!" Maybe he wasn't to parents of termies, but he was to me.  The hospitalist (who later turned out to be my new boss's wife... weird...) put him on my chest and I held him.  I cut his cord (I also cut Alec's as Colin refused) and they whisked him to the isolette in the room.  A moment later I heard him cry.  I kept on crying.  It was a beautiful sound.  His APGAR's wre 8 and 9, so they brought him to me to hold before they took him to the NICU.  I just couldn't get over how beautiful he was.

I ventured over to the NICU after I pumped a second time and showered.  My plan was to pump every 2 hours from 6am until 6pm and then every 3 hours from 6pm to 6am.  People thought I was crazy, but my milk came in quickly.  We got ribs and a cake for my birthday, which was obviously spent in the hospital.  Unfortunately  that night, the nurse called and said bradley's IV had infiltrated his TPN into his little hand and caused a chemical burn.  The whole back of his hand was black and there was an ulcerated area in the center.  It ended up taking about 5 weeks to heal.

Other than the IV issue, Bradley was our little rock star.  He never did end up needing oxygen support or other medications.  He started oral feeds on either 9/23 or 9/24.  Those dates get a little blurry.  He was jaundiced and had a hard time passing his meconium, but was otherwise amazing.  He was on full oral feeds by day 10 of life and was moved from the NICU to the CCN (continuing care nursery, a step-down unit).  Gone was our private oasis and amazing nurse. We were in a 4-bed room with new nurses to get used to.  On day 2 of being in the CCN, we got to try the bottle.  he ate like a champ.  We brought in our own bottles from home, which they happily used.  I was determined to breastfeed and didn't want even their "slow" flow nipples.  I had been doing the non-nutritive breastfeeding, and Bradley had taken to it.  The day after his bottle feed, I got to breastfeed him!  He was amazing.

It was around this time, maybe a few days earlier, that my nipples started their issues.  My old pump in style was not functioning properly and the suction was out of control.  I think that may have had something to do with it.  I likely started out with too small flanges, which contributed to it.  And I was pumping tons from the get go.  My areolas were raw.  I tried every remedy imaginable.  Maybe thrush, so I used gentian violet.  I had 2 strengths of APNO.  I had lansinoh.  I used warm saline soaks.  I air dried.  I spead milk on them.  I used ice.  Nothing.  Finally, my lactation consult in the NICU (God bless her) as well as an IBCLC friend who runs a physicians breastfeeding support group suggested nifedipine.  They thought I might have traumatic Raynaud's of the nipple.  I was also told to use the giant 36mm flanges and the APNO round the clock.  Within 3 or 4 days, my nipples were healed. 

Then latch issues started after we got home.  In the hospital, Bradley was a great nurser.  But once we were home, he started hurting and he nursed constantly.  On my parenting board online someone suggested tongue tie.  I looked at some pictures on Google and then in my sweet boy's mouth and wow! His tongue tie went all the way to the tip of his tongue! Not sure why no one in the NICU noticed this since he was examined daily.  He also had a very thick lip tie.  I have since learned these are common in families, as well as in preemies.  Alec didn't have this and no one in either family did, so we can thank preemiehood.  Luckliy my IBCLC friend took one look at my pictures and referred me to a pediatrician who cauterized tongue and lip ties.  The tongue was done first, and I was discouraged because nothing changed.  I wondered if because Bradley was 3 months old that he had developed bad habits we would have to correct.  2 weeks later the lip tie was done.  Once the cauterized area healed, it was amazing! No pain!  My husband reported that he had stopped screaming all day.  And his need to constantly nurse stopped, as he was better able to extract the milk. 

Since then, it's been mostly smooth sailing.  Bradley did have a largeish umbilical hernia, which I freaked out about.  I was so worried he'd need surgery, but the pediatrician said they normally just observe them, and it's so small it never pokes out anymore.  He does have the worst case of eczema my pediatrician has ever seen, and that is a constant struggle for us, but we keep it in check with steroid creams and super thick lotions.  My beautiful baby boy is now 14lb and 26in long.  His length is average size for a 6 month old and in greater than the 99th percentile for 4 month olds.  Crazy!

During my pregnancy, I never could have gotten through without 2 groups.  The first group are the lovely ladies on the high risk, preemie, and birth month boards on thebump.com. They are amazing, supportive, and knowledgeable-- even for non medical people!  I checked in multiple times a day every day for months.  It was nice to know others were going through almost exactly the same thing as me!

The second group is sidelines.org.  This is a specific support group for pregnant women on bedrest.  They were a godsend.  They assign you a buddy who can either call and e-mail you or just e-mail you.  You chat back and forth and you don't feel so socially isolated and alone.  I plan on volunteering as soon as I finish my class-- I am starting to get my CME's and experience together to get my IBCLC.

I also used an organization called Pictures of Hope.  They're a fantastic, non profit organization where photographers in the community come to your NICU and take professional pictures of your baby.  The sitting is free.  You also get 25 4x6 prints, as well as a discount (determined by the photographer) on any additional prints you get.  Our photographer drove 60+ miles from Queen Creek to Glendale to take Bradley's picture.  She was wonderful.  Many of the photographers are preemie moms too, so they really get it!  There is a list of photographers on their website.

During Prematurity Awareness Month (November), I put one fact about prematurity on my Facebook page every day.  My friends and family commented about what they learned and how shocked they were at what we went through almost every day.  It was nice that they could finally understand what I meant by "adjusted age" and stuff like the challenges preemies face.  There are Facebook groups for Prematurity Awareness Month, Parents of Preemies, Preemie Dads, and Preemie Resources.  I'd recommend joining any or all of these groups.

I am also doing the March of Dimes March for Babies to raise money and awareness for prematurity and high risk pregnancy.  It's amazing how many friends of friends have gone through a premature birth or difficult pregnancy and no one knew!  So I'm marching with my friend's friend's team.  Her 28 weeker is now 8 years old.  She has many of the same NICU pictures I do.  I am sure everyone else has these too.

I also participated in a study for the Organization for Teratology Information Services (OTIS).  Basically OTIS monitors women who have drug exposures in pregnancy.  You sign up for a particular study and then you track your medications, hospitalizations, and ultrasounds.  I was in the rheumatoid arthritis study, the asthma study, and the vaccination study.  They did follow up interviews throughout the pregnancy and a developmental pediatrician came out to examine Bradley about a month ago.  He did some special measurements and was really pleased at how he was developing.  That made me feel great.

We are also followed by the Neonatal Intensive Care Program (NICP) here in AZ.  The nurse comes out and does home visits for 18 months + to monitor the preemies' development and can facilitate entry into the early intervention system if needed.  NICP is paid for by the state, as is early intervention.  So, if we need speech, occupational, physical therapy or perhaps a dietician, she can make all that happen.  She encouraged us to apply for WIC (I qualified... a doctor! Love that short term disability only paying me 27% of my salary...) and social security, which paid for gas going to and from the hospital while Bradley was there.  She also talked to us about deferring my student loans and credit card bills until we got back on our feet. 

As an ob/gyn, I never knew about any of this.  I basically came into this situation blind.  I'd delivered many a preemie and put many a woman on hospital or home bedrest without thinking of the consequences of that.  Now I really think of how that affects a mom and baby and family and I weigh all of my decisions carefully.  I am a much more sympathetic and empathetic doctor.  It was shocking to me all of the things that went along with it.  Sure, we followed up on our preemie deliveries to see how they were doing, but we never got to see the human side of our actions.  Having lived through it now has taught me a lot.  Strangely, I am grateful for my experiences.  I do want another baby, but we have agreed that Bradley is our last.  We came through this experience as a family, but again, I have the guilt of "abandoning" my husband and 3 year old.  Alec was great-- he enjoyed going to the "hostible" and seeing me or spending time on my sister-in-law's farm.  It was a fun time for him.  It was agonizing for me to miss out on our lives.  I also feel like we dodged a bullet.  Twice.  We got lucky that we had no major complications with either of our sons, and we don't want to tempt fate.  If we do, will be get a 28 weeker this time? A 24 weeker this time? IVH? ROP? NEC? Death of me or the baby? It's not worth it.  I love my family too much to put them through all that again.

The magnesium did it's job and I was turned on my side and tipped head down and the waiting started again.  They also started the series of steroid shots to give John any chance they could.  I spent the next 39 hours waiting and being very closely monitored while my husband brought me back pictures of my son William with news that he was very critical but stable!  

The next evening the medical team decided that John needed to be delivered, he was slipping lower into the birth canal and there wasn't much else they could do.  John came into the world at 5PM, 39 hours after his brother, also weighing 535g.  He was also rushed off to the NICU.