Showing posts with label preemies. Show all posts
Showing posts with label preemies. Show all posts

Thursday, February 4, 2016

6-months old



Happy half-birthday to our beautiful girl, Marie Celeste Claire.



6-months well visit stats:
14lbs 7oz 


These past six-months have been intense, to say the least.  Celeste followed her NICU graduation with three-plus months of colic.  She is, after all, not even 4-months-old in her adjusted age. Although it has often felt like living in Newborn Neverland, Celeste's personality is steadily emerging and things are getting easier.  And I am slowly clawing my way out of overwhelm and exhaustion...

My saving grace is that she is a good night sleeper.  She wakes up to nurse, but goes right back to sleep, mostly uninterrupted.  Easy peasy, as Dominic would say.  I do have to give a shout-out to my hubby, who wakes up daily before 5AM with Nicholas, to give me a chance to keep snoozing with our littlest one.  I am not sure I would be managing as well if I was getting up with both babies!

Naps are not as easy, but she is still too young developmentally to be on much of a routine.  I am really looking forward to a more predictable napping rhythm in the near future.

Celeste is still breastfeeding exclusively, which is appropriate for her development.  We will plan to try solids when she is closer to 6-months adjusted to her due-date.

Favorite activities include watching her brothers play, chatting and talking, fist sucking, tummy time, being held, being held, and did I mention being held?  She also loves being propped into a standing position, which makes us laugh because she looks like a tiny little lady.  This also happens to be her pooping position, which makes us laugh harder.  Hoping this is a sign that potty-training will be a breeze.

Celeste has physical therapy every other week, and although she still has about a 3-month delay (normal, based on her due date), she hasn't missed any milestones along the way so far.  This little baby truly is a lesson in gratitude in every way.  May God continue to bless her.

Celeste, Celeste, you're the best!  We love you more than you could ever know.


 







Sunday, January 3, 2016

Baptism Ceremony for Celeste

Celeste was baptized the day after her birthday in the NICU.  It was a moment of so much uncertainty and overwhelm for us.  We didn't know how our daughter, born 11-weeks prematurely, would fair, and my recovery from the emergency c-section was in its very intense beginnings.  How beautiful, comforting and healing our faith felt in the midst of pain and confusion.  We gave thanks for our child and witnessed the floodgates of grace open for her tiny soul.  We gratefully welcomed her into God's family and took responsibility to bring her up in our Catholic faith.

Fast-forward a few months, on January 2nd 2016, we had the opportunity to celebrate her baptism liturgy in our Church.  Of course her first baptism was valid, but here we walked through the process and tradition with godparents, grandparents and family.  And again, we stood in front of God in gratitude for the miracle that we witness each day in our daughter.  

We are so blessed.

Celeste cried (loudly) for most of her baptism ceremony.  It felt ordinary and wonderful.




































Tuesday, November 17, 2015

Celeste's Birthday

We could not love our baby more, and although Celeste's birth story will always be significant and important, it was also one of the most frightening and traumatizing days of my life.  Despite this, God's mercy and grace is threaded throughout our story.  Celeste and I are both very blessed.  I hesitated to share it publicly, but have decided to post it today, on Prematurity Awareness Day, in honor of my beautiful little fighter and all that she has overcome.  

It has taken me months to get this birth story down.  Maybe that is because it isn't exactly a birthing story.  In our tale, a serious medical condition called a placental abruption occurred during my pregnancy which resulted in the premature birth of our daughter at 29-weeks gestation.  Placental abruptions occur in 1% of pregnancies.  The placenta peels away from the inner wall of the uterus thus putting the baby and mother in jeopardy.  In most cases, as in this one, the cause of a placental abruption is unknown.  I had a few symptoms leading up to the abruption however which escalated on the day before Celeste was born...

Tragedy in nature is unexpected.  Its evidence invades my iPhoto stream.  There is a happy picture of our little family posing in front of the theatre after seeing the Nutcracker.  Following that photo is one of Nicholas in his isolette and covered in medical tubing.  Nothing significant transitions the events.

The photo, like tragedy, simply appears suddenly.

 Fast forward to my more recent photo albums in which there are several happy photos of Michael and I on our first getaway in years.  I am smiling and pregnant.  There is another one of me blowing out the birthday candles on my 30th birthday.  And then appears a photo of another precious premature baby, even smaller than the last, at just twenty-nine weeks gestational age.

I woke up at 3AM on Monday morning of August 3rd with significant pain in my hips and thighs.  I slept on and off for a couple of hours before deciding to wake up.  Once I was up on my feet and moving around, I realized that I was having contractions.  I rested and forced down several glasses of water in the case that I was dehydrated from the summer heat.  As I got in the shower I started to worry.  These were the type of contractions that felt like pressure pushing down my body, rather than typical Braxton-Hicks contractions that make my belly feel round and tight like a basketball.

Despite the warning signs, I struggled to believe that this could be happening again.  I was only 29-weeks pregnant; five-weeks earlier in gestational age then when our preemie Nicholas was born.  Didn't we consult with several high-risk OBGYN's this time around?  Each had assured me that my chances of another premature birth were very low.

I got out of the shower and told Michael about my anxieties.  I needed him to stay home from work a little later so that he could watch the kids while I put my feet up and kept trying to hydrate.  

Nothing helped.  With tears in my eyes I called Labor and Delivery.  The nurse urged me to come in as soon as I could.  I dragged myself into the car and started driving... to turn around and head back home.  This can't be happening again, I thought.  Maybe if I go home I can convince my body to function in the way that pregnancy was designed to be.  Mind over matter, right?  Once I got home I ate breakfast and took my place on the couch once more time.  The contractions persisted.  Michael urged me to let go of my pride and go to the hospital, just in case.  I stormed out, upset and frustrated.  I didn't even say goodbye to the kids.  

I counted five more contractions during my walk from the car to Labor and Delivery.  I was told to seat myself in the waiting room for 20-minutes and counted six or seven more.  I worried.

I had imagined my daughter's birthday so many times.  The birth would be new and challenging in the way that all births are, but my girl and I would triumph.  I'd hold her in my hospital bed.  I would proudly hand to my husband his first daughter.  She would wear a big bow on her head as her three big brothers took turns admiring her.  And unlike months before, this time I would proudly hold her as the hospital staff wheeled me to our car, to start our journey home.

One of the reasons that I daydreamed about it was to help fight off anxiety and trauma left behind from my birth experience just 19-months earlier.  

I was finally called in to Labor and Delivery and hooked up to several monitors.  The contractions persisted as I waited for the doctor on call to tell me what was happening.  Apparently they were stronger and more frequent than I thought.  The doctor came in, checked my dilation (1cm) and I was almost immediately hooked up to an IV, catheter and Magnesium Sulfate to try to slow down the contractions and help protect my baby's brain from bleeds, in the event that she was born prematurely.  They gave me a painful steroid shot to strengthen my baby's lungs.  We did an ultrasound and saw that the baby was breech.  That meant a c-section, if my labor continued.  I tried my best to laugh it off;  she had been head-down just five days earlier during my ultrasound.  And I still had 11-weeks of pregnancy to go.  Surely she would turn!

I was given the Fetal Fibronectin test for pre-term labor, which came out negative.  This means it is highly unlikely that you will give birth within the next two-weeks.  This also confirmed our suspicion that I probably wasn't experiencing pre-term labor.  With this in mind, it surprised me to be notified that I would be transferring to a larger hospital with a higher-care NICU.  The hospital I was at only accepted babies over 32-weeks.  That meant that in the event that my baby was born, she would have to be transferred which would mean higher risks and a longer separation.

I called Michael and asked him to come over.  I was scared and in disbelief that my trip to the hospital hadn't been a short false alarm.  I was supposed to start homeschooling Dominic in first grade that morning.  I hadn't even kissed my boys during my emotional rant out the door.  And I prayed and worried for my 29-week old baby girl.

The Magnesium Sulfate started to make me feel pretty awful and tired.  It is otherwise known as "instant flu" and that could not be more accurate.  Before I knew it, several EMT's arrived to transfer me to a different hospital.  I prayed for detachment and humility as they lifted me in my hospital gown, tied to my catheter and IVs, into the gurney and pushed me into an ambulance.  Michael took my belongings and assured me that he would meet me at the hospital soon.

It was a pretty uneventful ride.  They sent a Labor and Delivery nurse with us in case my body decided to birth the baby in the ambulance.  But nothing happened-- I simply counted my contractions through the bumpy ride and thought about how fascinated my little boys would be to hear that I had taken an ambulance ride!

After the hospital transfer things seemed more hopeful.  They gave me a real bed and room in the Labor and Delivery Department which meant that I finally felt like I could rest and nap.  Michael arrived with my pillow from home and a toothbrush, and he worked by my bed as I rested.  A cheerful OB came in and announced the news that I could finally order a meal (it was about 5pm and I hadn't eaten since breakfast!).  He explained that everything looked fine and that my contractions were definitely slowing down.  He hoped that once I finished the entire 12-hour dose of Magnesium Sulfate, I would be ready to go home and stay pregnant for a couple more months.

My dinner arrived and Michael decided to go home to get the kids settled for bed.  I rested and counted down the hours until I could be taken off my IV (because, catheter!).

The doctors changed shift and I met the new OB who would be on call for the evening.  Dr. D checked me again and my dilation hadn't changed.  She enthusiastically reported that I was probably not in labor and that everything would be OK.  They would take me off the IV at 1130PM, and then give me another steroid shot the following morning.  And then I could go home!  She left saying that she would let me sleep and did not plan on checking in on my room that night.

At about 830PM, I felt some dampness on my legs.  I assumed that something was wrong with my catheter.  There was a towel next to me so I swiped the dampness and checked (I was slightly worried that my water bag might have broken).  I was extremely surprised to see bright blood all over the towel I had used.

I paged my nurse, who brought Dr. D in immediately.  My heart rate was going up but everyone in the room still seemed calm.  "You are likely bleeding from your dilation checks", said the OB as she put on her exam gloves.

What happened next was complete panic.  There was dark purple blood everywhere, and the OB couldn't even tell if my amniotic sac was intact.  She diagnosed that my placenta was abrupting and that we would have to deliver immediately.  I called Michael, who was about 40-minutes away, to come.  I called my parents and please for them to rush to our house as fast as possible to be with the kids.  I prayed.

Meanwhile, the nurses were putting on scrubs and preparing me for surgery while the anesthesiologist was going over her procedure for spinal anesthesia.  Between the Magnesium Sulfate and the intensity of the situation, I felt as though I was in a fog.  I was trying to comprehend everything going on, but there was a delay as my brain attempted to process the information coming at me.

The OB did an ultrasound to confirm the abruption.  My baby girl looked great (although still breeched) but we could see something unusual going in the corner of the screen.  I mentioned that I had been under the supervision of a high-risk OB for a blood clot since the beginning of my pregnancy.  Dr. D took that information and immediately got on the phone with my high-risk doctor.  On her way out she mentioned that we probably would not wait for my husband for the c-section.  My heart broke.  My body shivered with fear.

The phone call took a little longer than expected, which gave Michael a chance to fly over in record-time.  When Michael arrived things had calmed down a little.  The nurses still had their surgery caps on, but Dr. D and my high-risk OB were starting to wonder if the dark bleeding had simply been caused by my blood clot and perhaps a leaking amniotic sac.  She was still advising a c-section, but Michael and I took the opportunity to ask for some time to process, since we were no longer in an emergency situation.

We asked to speak to the neonatologist about what kind of struggles our 29-weeker would face.  Having had a preterm infant before, we consequently did not want to take prematurity or a long stay in the NICU lightly.  Witnessing my baby struggle for his life, and the deep intense pain of separation  from one's infant is not something I want anyone to experience.  It is extremely difficult and heart wrenching.

The neonatologist went over some of the risks that Celeste would encounter.  We learned that my steroid shot would surely help, but in the best case scenario, our baby would absorb those medications for 48-hours before her birth.

Since the bleeding had stopped, we requested to wait it out.  I wasn't going anywhere, if an abruption did occur.  But even being pregnant for two-more days would bless our baby's chances for a stronger start, and we wanted to take that risk for her.

Dr. D agreed and the staff deserted our room.  Michael took a spot on the couch and we tried to get some sleep.

About one-and-a-half hours later, around 11:30pm, my nurse checked in.  Her shift was over and she was getting ready to go home.  She lifted my bedcovers to look for more bleeding....

The nurse called the OB back immediately.  Within a minute they were wheeling me into surgery and announcing "Code C" over the hospital intercom.  I was told that there was no time for spinal anesthesia, but that I would be going under general anesthesia instead.  They would not let Michael in the room.  It would be too traumatizing to watch, they told him.  Neither him nor myself saw Celeste's birth.

As they lifted me from my bed to the surgical table, I glanced over, just to make sure that I was truly bleeding.  My entire bed pad was soaked.  I accepted our situation and focused on staying as calm as I could.  I don't think anyone could tell, as my entire body was shaking wildly with fear.  But I really did hand everything over to God.  Your Will be Done.

I was so scared and so alone.  When Dominic was born, Michael was holding my hand through the entire c-section, until we heard our baby boy's cry.  This was radically different.  I was naked, cold, terrified and alone.  I had no choice but to lean on God and trust.

People were all around me, getting ready.  Somebody was holding an oxygen mask on my face, telling me to breath.  I tried to obey.  I stared at the anesthesiologist's face above me and felt surprisingly relieved that they were putting me under.  Save my baby, I told them.  I heard the OB announce that they were ready.  I yelled out that I was definitely not knocked out yet.  The person in my face told me to take two more breaths, and immediately I felt my body relax into sleep.

When I came to, Michael was talking to me and holding my hand.  My hospital gown was back on.  We were in a much more quiet room, and there was a nurse on the other side of me.  She seemed to be adjusting my IVs, but I couldn't exactly tell.  The pain of my incision was excruciating.  I asked Michael question after question.  I worried that if I stopped talking I would pass out from the pain.

I asked Michael if our baby had survived.  He handed me his phone and showed me a picture of the most beautiful little girl I have ever seen.  He told me that he had heard her crying and that she was safe in the NICU.  She was born into our world on August 4th at 12:23am, and weighing 3lbs 2oz.  The nurse chided in that 3lbs was a great start for a 29-weeker.  Michael would go see her as as soon as they gave him the green light.  I asked him to tell me her short story again, and again.  And I kept telling the nurse that I needed more pain medication.  Having a c-section without an epidural is extremely painful.



Somehow in my overwhelming drugged-induced and pain-filled state we decided on Celeste's name.  We had had a long list of names that we liked at home.  We liked Celeste but hadn't settled on anything.  Suddenly however, our baby needed a name.  She needed a name for her story, for her life.  I think a part of me worried that I would lose my baby that night.  I didn't want her to die without me naming her first.

Eventually the morphine helped a little, and the nurses wheeled me in my bed to the NICU.  My heart broke when, for the second-time in my life, I saw my beloved child hooked up to monitors and struggling.  All by herself.  I was the only mother she had.  For months I had been with her 24 hours a day, and suddenly we were ripped apart.  I knew she would be facing most of her daily challenges without me for a while.  I knew that it would be a long time before we would be together again.  My emotional pain outdid my physical pain.  It was a very difficult night.





I was wheeled to a recovery room.   I do not think I slept at all that night.  I kept pressing my morphine button next to my IV.  It helped a little with the physical pain, but mostly I was aching with emotional heartbreak.  I worried about Celeste.  I felt empty without her nearby.  I was too tired to really process what had happened.  I would doze off for a few minutes because of the medications, and the constantly wake up from strange nightmares.  My sorrow was great and being awake felt like a nightmare as well.  It was difficult to process.

When the sun finally beamed through the curtains in my hospital room I started nagging Michael to go check on our baby.  She seemed so far away, but more than that, so alone.  He came back to announce that she was still stable.  I had the opportunity to hold her for the first time later that day, almost 24-hours after her birth.  They tucked her under my hospital robe.  She was tiny enough to fit in the palm of my hand.



August 4th would be the beginning of a 50-day stay in the NICU.  It was long and difficult but we also had a lot to be grateful for.  Because of my previous experience with premature labor I had gone to the hospital early and the staff had taken my situation very seriously.  I was in the right place at the right time when the crisis emerged.  Because of this decision, Celeste is alive.  And I am alive.  God's mercy is prevalent throughout our story.

Once a NICU parent, you are always a NICU parent.  My previous experience helped me to better cope, but it also scared me because I had a better understanding of what was really going on.  I had a better understanding of the challenges and risks that my little 29-weeker would face.  I knew it would be a marathon of a separation.  But I was also extremely blessed to have my sweet, happy and healthy Nicholas at home, to remind me that Celeste and I would be together again.  I knew that one day her little toddler legs would run to me as she squealed for her mama.  That one day she would throw a tantrum, or even roll her eyes at me!  I am humbled that God has entrusted Michael and I with another very special preemie baby.  I often feel like there is no way I can do this all again.  But I know that He doesn't give us more than we can handle.

Remembering these events is still difficult for me.  It will take time for me to heal.  I think that on some level, your birth will always hurt Celeste-- not because we don't love you with all we have, but because it will always mark the day that we were separated.   It was a brutal start for the beautiful person that you are, but you constantly exceeded our expectations and you fought for life.  You still barely look older than a newborn, but you are my hero.  You are loved.

In addition to your birthday, September 22, 2015, will also be a very special day-- the day that we were reunited.  And our journey has been worth every-minute because you came home to my heart and to my arms.  I will hold you tight for the rest of our time together because I am your mother.

Monday, November 2, 2015

a celebration of life


Some days were harder than others in the NICU.  A particularly emotional day for me was a Saturday at the end of August for which my baby girl shower had been scheduled.  The invitations had gone out early in the summer, only to be cancelled.  The teal maternity dress I had picked-out for the event was boxed up with the tags still on it.  Instead of gathering with friends to show off my big round belly, I was sitting in the hospital alone, watching Celeste in her isolette.  The two of us had been struggling a little that day.  I tried to hold her but her monitors kept sounding off.  The nurses suggested that I let her rest instead.  It pained me enormously to feel so helpless about mothering my own baby.  


I don't mean to constantly make all of my NICU stories tragic and dramatic, but the truth is that it was  very HARD on me.  A lot of darkness surrounded those days of separation.  In my sorrow I held fast that my reunion with my baby would come, but it did not ease the heaviness of my heart.


Fast-forward to the beginning of October, about two-weeks after Celeste's homecoming.  My sweet mother rescheduled the shower and we honored our little hero.  It was a little different than the traditional baby shower; Celeste was present, albeit mostly hidden to avoid contact that could compromise her immune system.  But despite all of these differences, many friends shared in our joy and helped us celebrate our little girl's life.  We oooh-ed over all of the pink outfits and ate delicious treats.  We chatted about sleep deprivation and swapped stories about newborns.  It was a beautiful day and I am so very grateful to my mom for giving us the opportunity to smile and to CELEBRATE.  I am also very grateful to God for the time I have been granted here on earth, to love and to cherish my little girl.