Allisa’s Birth Story

May 20, 2013

If you don’t believe in miracles, if you lost your faith along your NICU journey, and if hate consumed your heart, this birth story is for you!

The moment I found out I was pregnant, I never knew the obstacles i had to maneuver through. Single mom, 21 and no clue how to be a mother. Hurting from his father wanting me to end the pregnancy. I chose not to and he left me alone and pregnant. Knowing it would be complicated because I already had pulmonary stenosis and was high risk. At 14 weeks, I was diagnosed with preeclampsia. Yes, at 14 weeks! Before I knew the sex of my little bundle of joy! I saw my doctor every two weeks and each week I would have a home care nurse check on me and my baby. Somedays, I had to go to triage and get medical treatment due to high blood pressure.

18 weeks, I’m having a BOY! I was so excited! As weeks traveled to week 24, he dropped into position for labor and delivery. I was having contractions that were stopped by magnesium sulfate and a lot of fluids and bed rest! I was on bed rest, with minimal ability to work, until the day I went into labor.

January 2012 I went in for my weekly check up and had an ultrasound. Told them about my concern with pain I was experiencing above my right side rib cage that radiated to my back just below my shoulder blade. They said it was normal, it definitely wasn’t and was not at all prepared for what was coming.

Had my baby shower a few weeks later and two weeks after that, I reached 35&5 weeks!!! I was so excited! I knew he was going to be OK because I was able to keep him in there for that long and get the steroid shots to mature his lungs. Little did I know, February 13th 2012 I started feeling the pain I was telling my doctors about but it was debilitating. It was late, all by myself and was in such horrible pain I thought I was dying. I thought I was going to lose my son. I took a warm shower, tried a heating pad, different breathing exercises, and even different positions to try and ease the pain. It got to the point where I knew I had to have medical treatment. I called my mom at 5 AM on February 14th 2012. Balling my eyes out she hurried over and took me to the hospital.

What a long 45 minute drive!!! I was examined (3 cm dilated) and needed testing done. I was in labor and contracting but that part, I didn’t even know! They did blood work that showed my liver functions were dangerously high and was going into failure. I had an ultrasound that showed six very large gallstones in my gallbladder. One of which was stuck in my bile duct! My measurements for my bile duct was 11.5 and a normal size duct is 6! I was almost double in size! Talk about pain! They went ahead and gave me magnesium sulfate for my eclampsia and pitocin to kick labor into full gear. I was shocked I was allowed to labor and go for a vaginal delivery with blood pressures 160/100 and pain that was not able to be controlled with a pc pump of Dilaudid. They gave me the option of a epidural but said they can put it higher so it will block the pain from the gall bladder but not the labor or they would do a normal one to block labor and allow the pain from the gallbladder.

I chose to go high and not feel my gallbladder. I sat up, puked all over, my mom is passed out on the floor being drugged across the floor away from where I was throwing up, my sister and her husband walk in at that moment and was excused to leave the room now. 30 minutes later, I was pain free. I was able to sleep and breathe! Time passes, i was examined again, 4 cm dilated…blood work every 6 hours by a different needle! Stupid blood pressure cuff pumping up every 15 minutes to read a blood pressure higher than the previous reading. It’s now February 15th 2012, no change the entire day! I felt like death! I had no strength! I couldn’t move without my sisters help! I had a painful cath and was so weak from the mag, I asked for a c section…over and over again! Nope!

February 16th rolls around…4 AM, I force my doctor to break my water knowing 12 hours from now I could have a c section and this hell be over. 4 PM rolls around, exam time…5 cm dilated, 99% effaced and he was ready. 10 minutes later I’m screaming and yes, cussing. They didn’t believe me that I needed to push so they checked me again real quick and I was fully dilated but still needed to finish thinning out. 20 minutes later I’m pushing! Cussed at the nurses until they took my blood pressure cuff off, stopped taking blood from my poor bruises arms, and to get my cardiologist in here. EKG is done twice, I’m ok…got my iron and potassium labs back…iron 4 and potassium 1!

Cardiologist became afraid I was crashing so he sat down beside the excitement and had his team ready to jump in when I gave out. He even told my doctor that I should have an emergency c section because I was ready to crash. I kept screaming I can’t and my sister keeps saying I can and all these eyes staring at me looking between my legs, my mother crying in the corner afraid and saddened by my traumatized labor and delivery…

1 day old

5:48 PM, I gave birth to a beautiful baby boy! 36&2 weeks, 5 pounds 8 ounces 19 inches long! Beautiful pink skin…8 apgar scale…9 five minutes later 🙂 he was perfect I held him for five minutes until they took him away…never knowing that it could be the last time I hold him alive.

I ended up dazing out until they stabilized me. About 1 hour after he was born a nurse came in and said he needs to go up to the NICU for his difficulties with breathing. I was crying and said ok. About 4 hours after that, my sister went to go see him, my mom went home to shower and sleep, brother in law went to work, a doctor comes in crying…knowing it’s nothing good, I’m holding back tears and trying to listen to every word he says:

“I’m so sorry to have to tell you this. I was doing my rounds and came across to Bentley and noticed he had trouble breathing on his back so he’s on his tummy. His fontal is bulging so i ordered a STAT CT and it showed a large bleed in the back of his brain with excessive fluid build up. He needs surgery that requires special doctors that we just don’t have here. There’s two wonderful hospitals in Philadelphia. CHOP or St. Christopher’s hospital for children. Which one would you like me to call?” My sister walks in on the last part and me trying to choke back my tears…I said CHOP. He leaves and I wail in tears! Hyperventilating, shaking and my monitors are going off with my blood pressure reading of 200/160! About five minutes pass, that doctor comes in “CHOP doesn’t take your insurance, is St. Christopher’s ok?” Me “I don’t have a choice” he leaves and I wail out again and I’m shaking and hyperventilating and those damn monitors. My sister gets my mother to return to be by my side. My mother cried with me as my sister was holding onto a thread of trying to stay strong and not show her fear.

The transport team comes to my room, there he was, so perfect, so beautiful, so tiny, my little boy. All I wanted to do was pick him up, hold him, kiss him and take everything away. Touching his itty bitty fingers and stroking his back with my finger and kissing his little fist he had wrapped around my pinkie. The doctor explaining to me about the NICU and the calls I will be receiving for consent of treatments. He was fuzzy as everything else in the world got quiet and blurry. My only attention was on my son. His little cry, his perfect body, his blonde hair. Crying knowing this could potentially be my last moment with him alive. I sign the papers after they kept saying my name…I watch them wheel my baby away…about a hour later my phone starts ringing…

Our NICU Journey

All these words thrown at me and questions and this medicine and this surgery this and that…I was overwhelmed, scared, saddened…my world was filled with the unknown. My friend text me. She had her baby just 2 hours before me at the same hospital and wanted to visit with her son. I was quiet and I shut out the world. No one knew about what was going on until about a week later when people started asking questions…I get discharged by me cussing until they let me go the next day. I had to get out of there! Hearing babies cry and seeing mothers with their babies, it was crushing.

I go to be with my son and I was wheeled into the NICU after the long 45 minute drive…a nurse shows me my son….I weep! He was on a ventilator, a tube was sticking out of his head, wires and needles and tubes were everywhere! I feel helpless. I’m devastated to say the least! His neurosurgeon comes to speak with me. I ask him when he can come home and he said, “there’s no answer for that. He is very weak right now and we’re doing everything we can for him. Keeping him comfortable and stable is important. Now, we removed 2 teaspoons of blood from the back of his brain and you see these two incisions on his head, that’s for this, the external shunt. We keep an eye on his pressure by reading these numbers and I open the valve and drain the extra fluid until it comes down to a normal pressure. Blood is normal to be in the fluid because of the bleed that is stable now. Do you have any questions?” I’m just staring at him….thinking to myself, what the hell does that mean what are you talking about?! I just respond “no thank you.” I was in severe pain like before when I went into labor so i had to leave my baby boy and go to the ER…

2 days later I have surgery to remove the stuck stone and then I am discharged. I went to see my little boy. He looked the same…no improvement. I asked what color his eyes were and the nurses told me he never opens his eyes. It made me so sad. I was afraid he forgot me also. I sit beside him and hold his little hand and talk to him, sign to him and tell him stories. He opens his eyes and just gazes into mine!!! For hours, were just staring at each other! I had to go home 🙁 I was crying leaving him. I took the hour and some drive home crying the whole time. Got inside my quiet house and just bawled! His empty crib, all his clothes, no little boy was with me. Kept calling the Ronald McDonald house to get in…3 days later I get the call (drove up every day and spent a few hours by his side) that I was able to move into the Ronald McDonald house!!!

First moment I held him and kissed him at 12 days 🙂 

finally able to hold my baby!

I packed my things and moved in! I was pumping every 2 hours around the clock for my little boy. He had quite the stash in the fridge and freezer! Each day he seemed to be getting better. I spent 20 hours a day beside him, reading books to him, singing, and holding his little fingers. His vent was gone 🙂 11 days old, they removed the external shunt to watch what his brain does and I was able to hold him!!! I held him every hour of the day minus when I would pump for 20 minutes every 2 hours and the 4 hours I went to the RMH to sleep. I would eat in the cafe with my free vouchers because of breast feeding…days go by and he keeps having test for his pressure in his head and its still stable! He moves out of the critical room to the more active baby room…

I saw a little girl Carter come and was in his critical room. Asked a nurse if she was getting breast milk or if I could speak to her family. After tears and speaking with the baby’s grandparents, I offered my extra breast milk to them and they accepted and were so happy and thankful I was donating my breast milk because she kept throwing up formula. 2 weeks later, after one hell of a fight, she passed away. I was close to her family and they were thankful for my help and the food she ate and kept down. I still think of that family and that beautiful little baby girl Carter. I don’t think the feelings of loss and wonder will ever fade or go away.

A week later my son moved into the continue care nursery upstairs. Meaning, home was close! We were working on his feeds….I swear I thought he would never get it! On top of the feeding issue, his wound on his top soft spot started leaking clear fluid which meant, CFS. So of course, head CT and temporary “fixes” to stop the leakage. Test showed his ventricles are looking better than the previous test so there was no concern of the leakage. Dr. N performed a, what he called, a easy procedure. So I sat in to watch and console my son. I cried! It was traumatizing! He opened his wound completely and then re-stitched it and put a pressurized dressing on it. Where the hell was easy? My son and I think they’re nuts! That was so painful! Problem is solved and we can continue working on feeds.

Finally! He ripped his NG tube out of his nose and his doctor said “lets have mister Bentley run the show for 24 hours” I put him to my breast and he chowed down!! I offered a bottle and he would sometimes take it and others not. He kept gaining weight so we kept up with his show 🙂 4 days later, we go home! March 13th, 2012! The day before my due date!!!! His head was stable and he was just so perfect! We go home and he was such a piggy his first night! It took awhile to get into a rhythm at home since I was so use to the NICU. I did his “care” every 4 hours. Diaper, temps, head measurements, I even weighed his diapers! I stayed up for many nights watching him sleep in his bassinet. Making sure he was breathing since I had no monitors to tell me. When I did finally fall asleep, I would wake up to the sound of alarms from the monitors going off in my head. Panicked, I sat up and watched him breathe. I knew it was just all in my head.

We’ve had many appointments since he’s been home…one 5 day hospital stay for GERD and tons of test. He was in early intervention occupational therapy for 5 months. started at 4 months with a 49% delay (he was acting as a newborn still) at 9 months he graduated the program with 30% advancement! crawling, talking, standing, walking with support! He’s doing wonderful today! Still no external shunt! His brain scan in December 2012 actually showed that in a few more months, you won’t be able to tell what happened by looking at his brain! Where the bleed was, it’s empty now but tissue will fill that spot and his ventricles are perfect in size. His EEG showed his brain was completely normal for his age (actual) and that we don’t have to come back for another year! He is now walking on his own, talking in two word sentences and eats like a champ! He still suffers from GERD and in a few weeks he will be scoped (surgery) and go from there with on going treatment. He’s 27 pounds! 32 inches long! And is just perfect! Miracles happen and my son is living proof!

Doctors told me he was going to die. Then told me, it’s amazing he’s alive but here’s a list of things that will complicate his life…cerebral palsy, surgery head deformed, delay in milestones…etc. Well he has nothing wrong with him! No one can tell how sick he was at birth! His 3 scars on his precious little head are hidden by his beautiful blonde hair!

This is where we are to this day, 15 months old; 14 months out of our NICU journey!

I hope that this story of fear and miracles give you hope and strength to carry on your journey. No matter how complicated, or how long/short your NICU journey was/is, one thing we all share is, WE NEVER EXPECTED TO BE A NICU PARENT!

Though our lives are perfect, we get tested by God daily. My son has moments of random vomiting which requires test and hospital stays. Spikes high, uncontrolled fevers, prolonged diarrhea, all in which requires medical attention. He is thriving through all we are still battling. He is happy, healthy, and normal. 15 months have gone by too quickly and we are still on a NICU routine. I still suffer from PPD and PTSD but both are being treated by a medical professional.

No two stories are the same. They can have many similarities and sound the same to others who don’t understand but no matter your story, your NICU journey, we all have to remember, we’re not alone. I have lesser family support so it makes recovery harder for me. However, I am getting by.