Monday, April 29, 2013

This is a letter in response to Empowered Preemie Moms by Shaana Berman, author and friend of Preemie Resources. Her book can be found on Amazon.


Bradley, recently.

My name is Andrea Irving, and I am an ob/gyn physician and mother of 2 preemies. I finished reading your book 3 days ago, and I loved it.  I'd like to share my story as it is vastly different than your others.

When I was pregnant with Alec, I was a resident working 90 hours a week on average.  I was on my feet all day delivering babies, doing c-sections, and rounding.  I worked from about 5am until 6pm daily and on the weekend, I had one 26-28 hour shift.  It's a hard life, and it took its toll on me.  You'll find that L&D nurses, NICU nurses, and ob/gyn's often have pregnancy issues.  While I was a resident, we had a girl with PUPPP's, a guy whose wife PPROM'ed at 34 weeks, a NICU nurse whose baby had SVT and died shortly after birth, a girl who got HELLP syndrome at 30 weeks, and a few other things.  Those are the things that stand out though.


I get pregnant pretty easily, so 3 months after I got my IUD out, I was pregnant with Alec.  His gender was a surprise, as one of my biggest pet peeves is people who could care less that their baby has all its other parts.  So to us, that was a really unimportant part, and we went gender neutral on everything.  Well, I threw up until about 20 weeks, which was fine.  I had trouble doing surgeries because of the nausea.  I got into a car accident at 19 weeks, but everything was fine.  And my asthma got totally out of control around 22 weeks.  But everything was great.  At about 25 weeks, I started contracting enough that my attendings noticed and sent me home.  When I was 25w4d, I started a call shift.  It was brutal and I could barely waddle around by the end.  I was 25w6d when I went home.  I fell asleep around 11am and woke up at about 5pm in a pool of blood.  We rushed to Ob Triage at my hospital and I was admitted.  I'd had a small placental abruption, but the baby was stable.  His growth was noted to be in the 8th percentile, which is IUGR, but it was thought best to check a growth scan again in 3-4 weeks.  I got a steroid window to help mature lungs and protect brain and gut.  I was sent home on bed rest, much to my fellow residents' chagrin (they had to pick up my slack now), and life went on.  I contracted a lot, but enjoyed my time being bored on the couch.  At 29 weeks, Alec was only in the 5th percentile.  At 32 weeks, he was in less than the first percentile.  I got a steroid booster and was told I'd likely be induced early.  At 35 weeks, he had essentially stopped growing, and I was induced at 36 weeks.  Alec was born at 36w1d after a very uneventful labor and weighed 5lb even.  He was only 16 1/2 inches long though.  His weight dropped to 4lb6oz and he got jaundiced, so he was kept an additional day.  That was hard on me.  I cried and cried. But he passed his carseat test the next day and came home.  We had a hip dysplasia scare, but after a negative ultrasound, everyone was reassured. He had to go to daycare at 6 weeks, which broke my heart, but I had to go back to work.  He was sick a lot, but daycare babies are.  Oh, and I'd had a postpartum hemorrhage, a retained placenta, and a post partum fever. I had to have a D&C to get the placenta out.



Alec during his apgar testing.

The postpartum trouble started when Alec was about 4 weeks old.  I felt depressed, saw my ob, and got put on an antidepressant I'd had a good experience with.  It seemed to help at first, but then stopped.  My doctor increased the dose.  Again, it only helped for a while.  I started crying all the time and fantasizing about driving my car off this overpass onto one of the freeways here in Phoenix.  I started wondering if I could get my car to go fast enough to kill myself by accelerating into the telephone poles on the other sides of intersections.  Then I had to stop breastfeeding suddenly due to work contraints.  I started hearing voices.  I knew that was abnormal, and I'd cry when it happened.  It sounded like a crowd of people, like I could never be alone.  My husband finally'd had enough and told one of my attendings.  She sent me directly to a psychiatrist and I was diagnosed with postpartum psychosis and bipolar disorder.  I was immediately put on medication and in a few days I was a new woman. I took a long time off work to recover. 

Alec, of course, is no worse for the wear from this dark time in my life.  I feel terrible though.  I have so few memories of the first 6 months of his life.  It makes me sad.  But he's fine and loving, and that's what matters.  His only issue was a teeny language delay.  He only had about 2 or 3 words by 18 months.  My sister-in-law expressed concern (her older child was really early with his language, so I think her opinion was skewed) and gave us some paperwork on assessing for speech delay.  Well, I never looked at it.  Literally 2 weeks after she gave us the paper, Alec was speaking in full sentences.  Just goes to show how not all kids develop the same!



Alec at 12 months.

We had originally wanted two children, but this experience really put us off.  I'd had another IUD inserted rigth at 6 weeks postpartum, so I was willing to just have one child.  I was diagnosed with MTHFR C677T mutation (normal homocysteine), which depending on what literature you read, can cause IUGR and abruptions.  Or not.  I was also diagnosed with Sjogren's syndrome, which put the baby's heart at risk in any subsequent pregnancies.  But of course, my friends started having mroe babies.  And I wanted one.  I got my IUD out in March or April of 2011.  We decided in January of 2012, after much discussion, that we should actually try for #2.  I got pregnant in February.  I currently work 4 days a week for 40 hours, which is vastly different than residency! 


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.


I used more and more nifedipine for contractions.  Every time they were sustained, I ended up bleeding, so I got paranoid about getting my medication every 4 hours.  My blood pressure creeped up and I stated spilling a lot of protein, so I was diagnosed with mild pre-eclampsia.  They would continue to monitor me.  Bradley continued to grow well.  On the 14th of September, I was 31w2d.  They decided to do another transvaginal ultrasound to check on my previa.  It was gone! They attributed my bleeding to a chronic placental abruption and plans were made for me to go home with a home health nurse visiting periodically.  Well, the 14th was a Friday.  No one got ahold of the home health place until Monday.  It wasn't covered.  they wanted me to stay until they could find a company my insurance covered.  I flipped out.  I could check heart tones, pee on a stick, and take my own blood pressure.  I was a doctor!!!! I knew just what to look for.  Finally my ob relented, and I went home on the 17th.

I did cheat a little after I went home.  I scheduled 4 appointments, including a breastfeeding class, a massage, and an eyebrow waxing, for Tuesday.  I had 2 additional appointments for Wednesday.  Thursday, I had my NST at my ob's and all was well.  I was tired, but fine.  Friday around 4 in the morning, I woke up bleeding a little.  I was 32w2d.  I checked my blood pressure and heart tones.  Everything was fine.  I considered not calling, but I did at my husband's insistance, and headed tot he hospital.  I had a bad feeling, but didn't say anything.  I got admitted, of course. 


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.

Bradley at two days of life.

My placenta didn't come.  Again.  I hemorrhaged.  Again.  Fortunately, I didn't need a D&C this time.  I was able to pee after the useless epidural was taken out, so they wheeled me to the NICU.  Bradley weighed 4lb5oz and was 17.75in long-- longer than his 36 weeker brother!  He was breathing on his own, although tachypneic.  They anticipated putting him on CPAP after he tired out.  I got to hold his little hand, and then I went to my room.  I immediately called for a breast pump.  The lactation consultant had seen me at 27 and 31 weeks, and I knew what I had to do to get my supply in.  I pumped.  I got 1.7mL of liquid gold that first time.  I was ecstatic.


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.


Alec, now three and a half years old!

Anyway, that's my story.  It seems like a dream sometimes.  I look at the NICU pictures and just shake my head at the baby Bradley has become.  At the little guy Alec has become.  It will stay with me forever. 

Andrea Irving, D.O.


Breanna holding William for the first time.

My birth story starts almost exactly 3 years ago.  Yesterday was the third anniversary of my son's death.  I had a pretty typical twin pregnancy until my water broke at just 22 weeks.  That night I was taken to the hospital and told I would not leave until my babies were born and they would try to hold that off as long as possible.  I was told to even have a small chance we would need to make it to 23 weeks and 24-25 weeks to have a decent chance.  Even if I did make it that far it didn't look good for my son William, his amniotic sac was the one that had broken and there was not much fluid left to help mature his lungs.  

The next few days I just waited and talked to the never ending train of doctors that came in to talk to me about what my babies future could hold and honestly I don't remember any of it.  The waiting continued until around 1AM on day 5, something didn't feel right.  They discovered that I was ready to deliver my son William and I was rushed to labor and delivery.  Just before 2AM my son William was born weighing 535g (1lb 3oz) at 22 weeks and 5 days gestation (barely).  As soon as he was born he was rushed off to the NICU while the medical staff turned their attention to trying to stop my labor.  


William, born at 22 weeks and 5 days

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.  


John, born 39 hours after William now watches over his brother.
Later that evening I was able to see my babies for the first time, I couldn't believe how tiny and fragile they looked behind the glass.  The next few days were pretty uneventful, just waiting on my boys to grow.  

This changed when John was 5 days old, we received a phone call early that morning that John was not doing well.  When we made it to the hospital he was barely hanging on and there was nothing they could do.  He had pneumonia with a very aggressive bacteria and by the time they realized something was wrong it was too late.  That morning John passed away and has been watching over his older brother William every day since then.  


William on his way home!

Slowly but surely William started to grow and after a long 6 month NICU stay he came home!  William is still on a feeding tube, has limited vision, and mild CP.  He does not let this slow him down!  William's entire NICU story as well as current updates can be found at www.maravytwinwatch.com.

Here's William now!
   
Saturday, April 13, 2013

Grayson - 26 weeker

Our daughter, Grayson, was born at 26 weeks.  I had sudden eclampsia with a seizure.  She weighed 1lb 3oz, was 12 inches long, and was a 10% chance of surviving through the first day.  Since that day, Grayson has continued to overcome obstacles and battles that have come her way.  She had ROP laser surgery as well as a gtube nissen surgery.  Due to being intubated for almost 6 months she developed chronic lung disease.  After 236 days in the NICU (2 different hospitals), she is home!!  Grayson currently weighs 9lb 14oz and is 22 inches!  She is our miracle, our hero, and the strongest girl we have ever met.  We are so honored to be her parents!  




Kaidynn James, 29 weeker


Kaidynn James was born at 29 weeks. He was 3 pounds 8 ounces. Around 2 weeks old, things were looking great. Around 2 and a half weeks old they told us Kaidynn had a PDA/heart murmur. Not knowing anything about that, I was freaking out. 

Being teen parents, we didn't have anyone there for us besides our parents, but our parents weren't to happy with us either because they only got to see Kaidynn for a short period of time during their visits. At 3 weeks and 1 day old, Kaidynn had his heart surgery. 

After being on a ventilator for 3 day, he finally got put on regular oxygen supply thru a nosepiece. Since he was born with no sucking reflex, the doctors and nurses had to help teach him how to suck. Finally at 4 And a half weeks old, I got to feed my son his first bottle. He remained on oxygen until 7 and a half weeks old. He would do so good on his oxygen one day, then the next day he wasn't doing so well with the lower amounts of oxygen given to him so they had to up his oxygen. I knew he was a fighter. You could see it in his eyes. After praying and praying, he finally got the breathing thing down. 

When he was 8 weeks old, I went for my daily morning feeding and bonding time. His doctor came in, and she told me the news I had been dreaming of hearing since I found out I was pregnant. Your child is ready to come home. I was shocked. They told me he would at least be there till his due date, maybe longer because of the heart surgery. So at 8 weeks and 2 days old, I FINALLY got to put him in his carseat and in the car and head 35 minutes back to our house. I was shocked, scared, excited, and every other emotion possible. 

Now we will be 9 months on the 26th. He has two teeth. He sits up on his own, and we are starting to crawl! I always knew he was a fighter. He has showed us that you can overcome any obstacle put in your way. I still call up to the NICU at times to check and make sure the nurses are doing okay. Over our period of time spent in the NICU, they became family to us. I thank God everyday for my little miracle.

Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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