Friday, July 20, 2012

Tony, one year.

My birth story is a sad and scary one.  I had no trouble getting pregnant, both times conceiving in less than 2 months.  But keeping a fetus alive, proved to be a nearly impossible task for me.  I had horrible morning sickness and fatigue with my daughter.  They overshadowed the joy I felt expecting a new baby and left me feeling extremely guilty for not enjoying her more during her albeit brief life when I delivered her, already deceased, at 18 weeks gestation.  I’ve never known such darkness in my life.  Nothing brought me comfort.  
Six weeks after delivering her, my second round of test results were back with an almost certain cause for the late miscarriage, a septate uterus, which had apparently corrected itself according to my MRI.  So my perinatologist and OB/GYN gave me the all-clear to attempt another pregnancy and assured me I would not experience the same issues or be put on bed rest.  (I had asked about the bed rest because a close friend had spent several months bed ridden with her first child.)  I was desperate to put the bad feelings behind me.  

We started trying that night.  I went back to work from maternity leave the following day.

Nineteen days later, exactly two months after learning my daughter was no longer alive inside me, I tested positive for a second pregnancy.  In sharp contrast to my first pregnancy, I was terrified rather than elated.  Were we ready?  How could I love another baby as much as I loved my daughter?  What if this one died too?  You can’t replace a baby.

But I was happy to have a second chance.  This time, I’d be a better mom. 

Two weeks later, I hemorrhaged.

The on-call doctor didn’t seem to care that I was bleeding and pregnant.  “This happens sometimes.  Most of the time it is implantation bleeding and does not cause a problem.  But if it is a miscarriage, there is nothing we can do about it,” she told me matter-of-factly, as if she were talking about a lost book or something.  I left her office feeling helpless.  But she had prescribed pelvic rest, and that I could control.  So I did my best to take it easy and wait for the bleeding to stop.

When I followed up with my OB at my dating ultrasound the following week, she reiterated the on-call doctor’s diagnosis and recommendation and said to call if it happened again.  It did the next day-- a week after the first time-- and again a few days later.  No doctor seemed to care.  My perinatologist agreed with both OBs at our scheduled meeting a week later, after all, I was only 7 weeks pregnant and miscarriages are common around that time.  Three days later, it was like someone had turned the faucet on…I bled for an hour, saturating pad after pad.  The phone nurse seemed very nonchalant about the bleeding when I called around 10:30 PM and asked me to make an ultrasound appointment in the morning.  When I arrived, they rushed me to the perinatologist’s office for the ultrasound, after which I was given the bad news: I had a subchorianic hemmhorage, and I would be on strict bed rest from the time I arrived home until it healed, which in most cases takes about 1-2 months time.

It didn’t heal. 

At 13 weeks, I had been hemorrhaging less often than in my early weeks of bed rest, so I was allowed to modify my bed rest to take the stairs a couple times per day and take a reasonable shower.  (On strict bed rest, I got 5 minutes, which isn’t really long enough to do anything other than wash my long hair.)  That Wednesday, I had the worst pain yet, coming and going and squeezing my torso with immense strength.  All I could do was scream from the pain.  I called the OB because surely something was different.  My husband rushed me to the clinic for an emergency ultrasound.  The technician was doing regular clinic hours that day, thank goodness, but she was my high risk ultrasound technician usually.  She was surprised to see me and even more surprised by the shrieking I was doing.  (They wouldn’t even let me sit in the lobby because I was scaring the other patients!)  She had a nurse run to get the on-call doctor shortly after beginning the exam.  

This could not be good.

The doctor did a quick pelvic exam upon arrival to the small, dim room.  All the healthcare professionals stepped out of the room together afterward.  My husband, our unborn baby, and I were alone in the very scary ultrasound room—the same room that had brought us happiness just seven weeks earlier at our dating ultrasound.  When they returned, the OB said the words etched in my memory, “Your placenta has abrupted.  Your uterus is as hard as a rock.  You will not be pregnant by the morning.  I’m scheduling a D&C for tomorrow.”

“Like hell you are!”  I screamed, “His heartbeat is 156!  And I’m far enough I can labor through it, so that is what I’m going to do.  This is NOT my first miscarriage!” 

“If we allow that, you will most likely bleed to death.”

“Well then, I guess I’m going to bleed to death because you’re not taking my baby!” 

“We’re not going to let that happen.”  And the doctor excused himself to give us some privacy to deal with the emotions.  At that moment, I stopped caring about the pain.  A strange calm washed over me as I resigned to bring my baby to life or die trying.  We called our pastor.  And they admitted me to the hospital attached to the clinic.

A few hours later, full of IVs and resignation, I was approached by the same doctor.  He delivered the best news of the day, “There’s still hope.”  My contractions had stopped, the bleeding had eased, and the baby still had a strong heartbeat.  When pastor arrived, we shared the good news and prayed.  I was released the following day, prescribed strict bed rest until delivery.  

As the weeks progressed, the hemorrhages happened less frequently but more intensely.  I would awaken in a pool of my own blood some nights, so I began sleeping on a towel.  We rushed to the ER several times as I cramped violently and passed blood clots the size of my fist.  When this would happen, I typically vomited, became light-headed, and got to the floor as quickly as possible to avoid the dangerous fall that would come if I lost consciousness.  I cannot describe the terror I felt crawling back to the toilet, plastic cooking spoon in hand (don’t worry, this was its final purpose in our home) to scoop the clot out of the toilet and check for gray fetal tissue.  No one can ever get used to that. 

But things were looking up.  My perinatologist felt that by 19 weeks, I did not need to be seen every week anymore.  I dropped from weekly ultrasounds to every 3 weeks because baby was growing and developing nicely.  When Viability Day came at 24 weeks, we celebrated with sparkling grape juice.

The morning of my 25 week appointment, I awoke in the early morning as a large clot punched through my cervix.  “I’ll be admitted today,” I told my husband as I returned to bed.  So he made arrangements to take me to my afternoon ultrasound.  We were in the perinatologist’s office all of a minute after the ultrasound.  We had discussed this possibility before, so all he had to do was reiterate what was happening.

My hospital room was clinical and lonely, but it was a single room, something I’m eternally grateful for.  I know that I could not have handled a happy nursing mother bedding next to me; I could barely handle hearing the healthy babies cry in the hallway.  We had a lovely nurse at check-in who made a deal with me, “As long as you stay pregnant, you get cheesecake.”  I was once again hooked up to IVs and monitors, and I received a round of steroid shots preparing for imminent delivery in the next few days. 

Three weeks later, I was still pregnant and still in my hospital room, the closest room to the OR.  By now, I had decorated and befriended many members of the hospital staff.  A “chain of love” in green, cream, and pink (the only colors available on the craft cart for some reason) festooned my walls, one link per day of bed rest so far and one link for each day I hoped to stay pregnant.  I looked forward to my hot lunches, since I’d spent most of the last few months eating peanut butter and jelly sandwiches and cereal.  Don’t get me wrong, I had plenty of days I was angry and did not want to talk to the staff or visitors, but I did my best to stay positive.  The pet therapy program helped a lot.  I would get random visits from various dogs during my stay.  But I kept holding out to meet the pony—that’s right, I said pony! 

"...that's right, I said a pony!"


Now at 28 weeks, I’d been complaining that the blood didn’t seem like blood anymore, too clear and too constantly gushy.  So my nurse did a test for my water being broken.  (I’d battled low fluid for a long time, so no one was concerned before this.)  Barely a minute into the test, which is supposed to take several, she confirmed that I was leaking amniotic fluid pretty heavily.  So I got more IVs, more steroids, and more scared.

Again, I avoided having the baby when everyone thought I would.  After a week, my perinatologist let me have the IV ports out again until necessary and gave me the best news I’d had in a while, “If you are still pregnant a week after your water breaks without infection, there is a good chance you can make it to 34 weeks.  That is as far as I will let you go, though because at that point the potential detriment will outweigh the potential good of staying pregnant.”  So we continued.

Three weeks later, my husband brought me Olive Garden takeout to celebrate our second anniversary.  I turned down my hospital dinner, including the cheesecake that was to be my dessert.  That night, I went to sleep with some nasty indigestion and a loving husband kissing me goodnight and heading home.

In the morning, I still had the indigestion when I woke up, so I waddled to the bathroom.  That brought me no relief, so I called the nurse.  It was early, about 2 hours before shift change, so she got there fairly quickly.  “Let’s put you on the monitor,” she suggested.  After about an hour, she came back to check on me and said she wasn’t concerned because she didn’t see any contractions.  But I felt worse, so I asked if the on-call OB could stop by.  He had just finished a delivery, so he came in a little while later.  I stayed on the monitor while I waited. 

He had come to be one of my favorite on-calls because on weekends, he would sometimes bring in his terrier, a spunky little pooch with a skull-and-cross-bones scarf.  I think the dog was as excited to see me as I was him.  He did not have his dog with him that day, though; it was a Tuesday.  He put his hand on my belly and watched the monitor.  Soon I was crying from the pain; then it eased.  Again crying, then eased.  “You are having contractions,” he said, “I don’t know why they are not registering on the monitor.”
“Am I in labor, then?”  I asked.  I had been texting my husband since I woke with pain, and I needed to text him soon if I was in labor because otherwise he would leave for work.

“It’s almost shift change.  I’ll let the next on-call check for labor.  He should be here in a few minutes.”
I texted my husband who had already taken off work because he was so concerned by my messages.  He was there before the next OB arrived.  Sure enough, when the next OB did a pelvic exam, I was 4 cm dilated and 90% effaced.  “You’re in labor,” he said.

“Give me some drugs,” I said, “I’m having a cesarean because baby is breech and want to be in as little pain as possible.”

He made me wait while he got an ultrasound machine to double-check baby’s position.  Yes, baby was still frank breech, as if to stop my body’s numerous attempts to end the pregnancy early.

Soon, I was shaved, prepped with IV ports, and briefed on what would happen in surgery.  My OB met us in the OR.  I was grateful for the release from my bed prison, despite my concerns for my baby’s health and well-being as a 31 week preemie.  The surgery went quickly.  My husband almost didn’t make it into the room in time for the actual birth.

My son, Tony’s cries were the most beautiful sound I’d ever heard!  Many preemies don’t cry right away because their lungs aren’t fully developed, so I was a little surprised and extremely grateful he came out crying.  His weren’t fully developed either, but the steroid shots helped to mature them as much as possible.  “Tony, be brave!  I need you to be brave!  I love you!” I called to him.  He was attended to by a team of neonatal specialists who showed him to me momentarily before whisking him away to the NICU while my doctors stitched me up and sent me to post-op for a few hours. 

Tony at birth with his new friend, Pooh.


Waiting to see him was hard.  My husband followed him to the NICU and took some pictures until the NICU staff asked him to leave the room while they intubated the baby.  He came back to visit me and show me pictures, answering all my questions about how he looked and smelled as well as what was happening down the hall in the NICU.  Tony weighted a whopping 3 lbs. 11 oz. and was just shy of 16 inches long.  I did not get to visit him for an eternity—ok, a couple of hours of post-op—and I when I did, I was wheeled to the NICU still in my bed as the epidural wore off.  He was beautiful!  And he knew my touch.
I could only stay with him for a short time because he needed his sleep, and I needed to pump.  While I was in between visits with Anthony, the pony came for pet therapy, as if she’d waited to meet me, so she could celebrate with me. 

Having a baby in the NICU was tough.  After 6 months of bed rest, my muscles had atrophied.  Any mother who’s had a cesarean can attest that the first few days are full of intense pain at the surgery site, but I could barely walk 100 feet before the surgery.  My nurses encouraged me to walk my wheelchair down to the NICU to regain strength.  I would walk as far as I could and get a push the rest of the way.

I held Tony for the first time on his third day of life.  He was only on the ventilator for 2 days, which was the main reason we were not able to hold him the first 2 days.  Holding him was incredible!  But I cramped up really badly from the oxytocin release and had to stop after only about 15 minutes.  My husband held him that night.

Over the next six weeks, we had our share of ups and downs but mostly positives.  We tried breastfeeding around two weeks old (33 weeks gestational age), which was a mix of emotions.  Tony knew exactly where his mouth should go, I’ll always remember the sweet look on his face as he looked up at me, mouth agape, as if to say, “I’ve got my mouth in the right spot; where’s my milk?”  Alas, he just could not get enough suction.  We had some help from nurses and lactation consultants, but he just did not get the hang of it.  After about 2 weeks of trying, we decided to try a bottle so that we could take him home when he got the hang of eating.  He did much better with the synthetic nipple, though he was able to suckle my breast for a few minutes before we left the NICU.  He did not successfully nurse without a nipple shield until he was 3.5 months old (1.5 months adjusted age).

He was put on CPAP after the ventilator for a few days before going to a nasal cannula that stayed until he was 6 months old (4 months adjusted age).  He hated the tubes attached to his face and would try to pull them off.  He did this until the cannula came off.  I hated having to put it on him.

He spent about two days under the phototherapy lights because his bilirubin levels were too high.  He had an orangey color.  And he wore a little eye mask that made him look like a movie star tanning while he was under the light.  He was in an isolette at the time to reduce the amount of stimuli around him to help him sleep.

He had lots of tests to make sure he was healthy.  He had ultrasounds on his head to check for bleeding; thank God there was none!  Several times, the respiratory therapists tried to take him off oxygen, but his blood oxygen levels always dropped.  And he had a chest ultrasound because of a heart murmur.  His hearing test came back normal, and he passed his car seat test.

Near the end of his NICU stay, he had an eye exam, which was horrible!  I was asked to leave the room while the ophthalmologist did the exam because he cried so much.  When I came back, Tony was limp and unresponsive.  He had had his circumcision and the chest ultrasound that day as well.  The neonatal team tried to assure me he was just tired, but he was not acting like he normally did, even tired.  This is probably my worst memory of the NICU.  I picked him up and held him while the nurse jabbered at me about who knows what.  I was angry that he was so unresponsive—what had they done to my sweet little boy?!  “Please leave us,” I implored the nurse.  I held him close and kissed him.  When the doctors came in, I was still pretty upset.  They had scheduled too much for my little guy.  And he would not eat, which was our last big hurdle before he came home.  I did not want this to set him back.  His feeding tube had been removed, and now they were threatening to replace it for a few days.  I was devastated and angry, so I told the doctors why I was upset.  They said that they’d do what they could to make sure Tony could come home as soon as possible.  And the home health nurse brought us our oxygen concentrator and taught us how to use it and our apnea monitor.

The next day, we were able to room in with Tony.  It was a long night, since the apnea monitor we had received turned out to be faulty and false-alarmed numerous times throughout the night.  Within a few hours, we had to disconnect it and use a hospital monitor because the alarms were so frequent.  My husband and I were so scared every time.  But otherwise, the room-in went well, and we received a new monitor the next morning. 

We stayed until early afternoon that day, a Saturday in mid-August.  We filled out our paperwork, said farewell to the nurses, doctor, and other staff, and packed up all the stuff we got to take home.  It was emotional taking him home for the first time.  We were happy to have him close to us but very scared to bring him home in less than perfect health.  The first night, no one really slept in our house.  We were too nervous, and Tony was in the newborn phase, waking to eat every few hours.  But we eventually found our groove and learned how to care for him calmly and rationally. 

The chain of love around Tony's room.


As a one year old, he is still behind on some things developmentally, but he is happy and well-adjusted.  He pulls himself to standing, communicates his needs and wants, and loves to watch the monkeys at the zoo.  He even blows raspberries on my legs, like I do to his belly.  This sends us both into fits of laughter.  And I don’t know that I would change our story as awful as the memories are because I know I’d appreciate him very differently without all the difficulty in getting him here.  Our chain of love now bedecks his bedroom, a daily reminder of how far we’ve come.

0 comments:

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

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