saying goodnight

Cullen Steiner Veals

Planning a memorial service for your baby SUCKS. No one should ever have to do it.

Sitting in the funeral home yesterday was SO SURREAL. I kept saying to myself, this isn't real, I'm NOT here. Jimmy and I arrived early to set up....setting up the alter for my baby boy....ugh. There was a beautiful plant from the kids' pediatrician's office, a cute blue and white floral arrangement from the Salisbury PD, an adorable yellow and white arrangement from a good friend of my moms and a stunning floral arrangement from one of my best friends and her family. The tears flowed. We brought this statue of a mother and father holding their baby, pictures from the day Cullen had passed done by our new friend, and of course the Robin doll I found on amazon. After all, Cullen will always be Robin from the crime fighting duo.





As 1:30 rolled around people started to show up....needless to say I've been living in Salisbury for just about 9 years now, I have a few really close friends. But I had NO IDEA how many people cared SO MUCH about my husband and I. And yesterday at the Memorial Service for Cullen I was shown exactly the love people had. We believe there were over 60 people that showed up, and we know more would have liked to. All these people there to support Jim and I and the special few that actually got to "meet" Cullen. I can't express into words to convey how OVERWHELMING it was....to have THAT many people come....it was so so so special.

The service began, and to be honest, I didn't know what to expect. We decided on a few songs, songs that would make us smile, Beautiful Boy by John Lennon, Over the rainbow by Israel Kamakawiwo'ole and Here comes the sun by the Beetles and just one poem I wanted to read....

“These are my footprints, so perfect and so small. These tiny footprints, never touched the ground at all.

Not one tiny footprint, for now I have my wings. These tiny footprints were meant for other things.

You will hear my tiny footprints, in the patter of the rain. Gentle drops like angels tears, of joy and not from pain.

You will see my tiny footprints, in each butterflies' lazy dance. I'll let you know I'm with you, if you give me just a chance.

You will see my tiny footprints, in the rustle of the leaves. I will whisper names into the wind, and call each one that grieves.

Most of all, these tiny footprints, are found in mommy's heart, cause even though I'm gone now, we'll never truly part." - Unknown

I couldn't be more happy with the service. Pastor Johnson, who is also Stella's vice principle, was amazing. Psalm 23 and his explanation of it truly was beautiful.

The LORD is my shepherd, I shall not want 

He makes me lie down in green pastures, he leads me beside quiet waters, 

he refreshes my soul. 

He guides me along the right paths for his name’s sake. 

Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. 

Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever. 

We learned that we aren't saying goodbye to Cullen.....We are saying Goodnight. Because we will see him one day again. I like thinking that way.....

After the service more of our friends came to give their condolences. Again, SO overwhelming with all those who came. Several people came back to the house...it was really nice. Seeing most of our friends for the first time was something Jimmy and I were afraid of. Can't really say why, but we are SO glad we finally did see them. I guess we were finally ready.

It's back to "normal," my mom left this morning, she was here for 5 weeks. I'm SO glad she was here. She wasn't just here for me, but for Jimmy and the girls. My family needed her just as much as I did.

I can only speak for myself, but I'm ready to feel normal. I'm ready. Not to move on, but to just BE again.
It's the girls' last day of YMCA camp today....next week they have Vacation Bible School....Jimmy and I are going to have 2 hrs each evening to ourselves with Grady. It'll be really nice.

Well....it's back to the grind. I better go defrost something for dinner! It's a NEW DAY.

Sadness, confusion, anger, happiness, excitement and joy

Monday June 27, 2011


Tomorrow I would have been 36 weeks pregnant, instead, today I sit here in the mother/baby unit at the hospital as the new mother of Grady James Veals.
His twin brother, Cullen Steiner Veals is now in heaven.
It's been the HARDEST most difficult time in my life.


The amount of emotion I've been through is indescribable.


Thursday, June 23rd I had tons of contractions, all over the place, all different strengths and different lengths of time. About 5am on June 24 I noticed I was bleeding, figuring it was my bladder infection (I had forgotten to take some of my meds and just figured it got worse)  I woke Jimmy up, told him I was going to get checked out at L&D, thinking it was not a big deal.


Well, fast forward, I was one centimeter dilated and my cervix was bleeding and my contractions were 5 minutes apart....I was in early labor.


By the time I called Jimmy it was 6am, I tried to call my mom but it took a while to get a hold of her, after all it was 3am in LA.  Thank goodness for GOOD friends taking care of our girls and ME over the next few days....You know who you are.....THANK GOD FOR YOU ALL!


The C-section  (written 7/18/11)
I was originally scheduled for my c-section at 38 weeks (both girls were c-section so the boys would have to be too) ....I was only 35.......I couldn't believe my days of being huge and pregnant with the boys was over.


They rolled me in to the operating room and the anesthesiologist was there....they tried SEVERAL times to get the spinal in.....it SHOT down my right leg twice, I screamed in pain (so loud Jimmy heard me as he sat in the recovery room waiting to come in) They actually told Jimmy at one point they were "having a hard time getting the spinal in and they were trying not to have to knock me out"


The nausea and feeling them pushing on my stomach was overwhelming....throwing up on the table while laying on your back and being temporarily paralyzed is HORRIBLE.


Grady was the first born....7:43am, I heard a small cry.  Cullen was born at 7:44am with a quiet smaller cry.


I had no idea anything was wrong.  Before they whisked the boys off to the NICU they showed me each one. All I remember saying was that Grady looked very white and Cullen, very RED.


The next few hours were a blur.  To me, it all felt like it happened within an hour.....It was 5! I was on morphine from the c-section then at some point after seeing and hearing about the boys' conditions I was given xanax to deal.


Twin-twin Transfusion Syndrome 


The boys were labeled from early on in my pregnancy as Di/Di  (Dichorionic/diamniotic)---two separate placentas and two separate amniotic sacs.  "They have the lowest mortality risk of all twins."


TTS NORMALLY happens when you have Monochorionic/diamniotic (ONE placenta, 2 amniotic sacs)


TTS occurs NORMALLY when blood from the placenta is diverted to one twin.  The "Donor" twin becomes smaller and  anemic, the "recipient" becomes larger and Polycythemic (an increase in the total mass of red blood cells)


The boys each had their own placentas, which were on the back wall of my uterus, and they fused.  The fusing can happen, but the pathologist confirmed that a network of blood vessels formed between Grady and Cullen's placentas and that is how Cullen became the recipient and Grady the donor.  I've been told this happens .5% of the time with TTS. So rare that hardly any information on it exists.  They also say this was an ACUTE version.  The chronic version is usually caught over a few weeks by ultrasound.  The acute version can even happen within a few hours.


I believe it was over the last few weeks of my pregnancy. I felt a difference in Cullen....one that had me in L&D a ton. My instincts told me there was just something that wasn't right AND he wasn't moving as much as he used to....but once they found him with the monitors, he looked "good."  Acute TTS  happens normally in the third trimester, the boys looked great on all their ultrasounds, the last one at 34 weeks there was about a 1 lb difference between the two but it was not a 20% difference in which the Dr's would start to be concerned.


THE NICU (this may be difficult to read)


Cullen was brought back to the NICU, intubated & placed on a ventilator and a umbilical catheter was placed for antibiotics.  His umbilical cord was also double the girth of Grady's, it was larger than a silver dollar. Cullen's heart stopped an hour after he was born. He coded for about 3-4 hours. His Doctor, Nurse and respiratory therapist worked non stop.  He had pulmonary hemorrhages, in which they tried to correct the thick amounts of blood in his body.  They also had to give him several doses of epinephrine to maintain his heart rate.  Again, at an hour in he could barely breathe on his own and his eyes were fixed and dilated. He was very very sick.  Children's National Med Center transport team arrived and planned to take him back in the helicopter.  At the time they were going to depart Cullen started to hemorrhage again, backing up into his endotracheal tube.  This was the end.


At some point during all of this, I was taken to the NICU twice....I think I've combined in my head both times...This is what I remember, Jimmy would tell you slightly different.
                                                             
Jimmy and I were rushed into the NICU from the recovery room. I can't even describe what was going through my mind....I don't think I was even thinking.  I remember nurses praying with me and over me.  I remember being rushed from one end of the hospital to the other.  Being wheeled in the NICU....I remember nurses crying. I remember  seeing a lifeless purple/blue foot on a table and crying out....crying out in disbelief, in pain for my baby.  There were tubes everywhere. Blood on the table and blood coming out of my limp baby's mouth.  I saw the therapist helping my baby boy breathe. I blamed myself. From the get go I didn't want to be pregnant. I didn't think I could raise more children. I wasn't strong enough. I wasn't a good enough mother. And NOW...now that my boys were here, I KNEW I WANTED THEM. I WANTED THEM and Cullen was being ripped from my arms.....I hadn't even held him yet.  I yelled at myself...I hated myself. I would have done ANYTHING to trade places with my poor sweet innocent baby boy. I sobbed. Jimmy sobbed. The nurses sobbed. 


We spoke to the Dr. at the end. The end being after 4 hours of constant resuscitation, after he started hemorrhaging from his lungs (because of all the extra red blood cells Cullen couldn't clot....he bled from every point on his body they pricked with needles.)  They knew he wouldn't make the transport back to DC.  It was  also said that after a neurological exam it showed he more than likely suffered severe brain injury.  We had them stop.  We decided to let our baby go........ I wanted to be with him on his last breathe. I was there at his first....I NEEDED to be there for his last. It was the least I could do.  He would never learn how much I REALLY DID LOVE AND WANT HIM.....


I held him....I laid in my recovery bed in the NICU and they helped me hold my dying baby.  I could hear him TRYING SO HARD to breathe, but he was leaving me.  He bled from his mouth and nose...I never even saw him move on his own.  I don't even know if he ever opened his eyes.  I saw the flat line on the monitor.....I cried out some more.....he was GONE.  I barely got to say HELLO to my boy and now he was GONE.  We all cried.  They pushed Jimmy and I to hold Grady.  How do you rejoice for the child that is still with you when you are so heartbroken because of the son you just lost?!? 


Grady was placed on a c-pap machine to keep his lungs from collapsing. He also was given a blood transfusion since his hematocrit (% of blood volume occupied by red blood cells)  was so low. He was placed on antibiotics for 7 days as a precaution because of all that happened to Cullen.


We held Grady, as best we could while he was hooked up to all the wires.


I don't remember a whole lot more that day.  Bits and pieces here and there. It all felt very dreamlike.  HOW could this be my REALITY???? Did that ALL just happen?  Did I HAVE 2 baby boys?  

GRADY JAMES




Grady spent 11 days in the NICU.  He was weaned from the Cpap to a nasal cannula the same day he was born. He had his blood transfusion, ended up with jaundice and his GI tract had to be "primed" for food, they call this Trophic feeds.  The blood his body did receive went to his brain, heart and adrenal glands.  He was given supplements I liked to call his Gatorade and his fat milkshake.  On his third day of life he was given breast milk through his feeding tube, a whole 5cc's!


The first time I went to the NICU after Cullen's death I didn't think it would be a big deal.  I was going to see Grady, right. Was I wrong.  Besides it being the first day I had been up walking around after my surgery, I showered for the first time and made the long walk down the hall.  If you've ever had to enter any NICU, you know all about the beeping and alarms....WELL, I don't do well will that stuff anyway, but this was totally out of control.  There must have been over 17 babies there....LOTS OF NOISE!  I could hardly look at the bed Cullen had been in...as it was it was next to Grady's. Needless to say I had a major anxiety attack and was taken back to my room in a wheelchair.


I had several moments very similar to that while in the hospital.  There were twin boys already in the NICU and more twins that were born. Twins born smaller than my boys, healthier than my boys.....WHY did I only have ONE BABY NOW!?!?!? IT WASN'T FAIR!  I would just burst into tears.  THANK GOD for the nursing staff. They were unbelievable.


Grady's IV's had to be changed often because his little veins couldn't handle them for long. One night around midnight I walked into the NICU and Grady on the table screaming, and 2 nurses around him.  They were trying to get another IV in him, 2 they tried already blew. Needless to say, I LOST IT.

ETC




These were the scariest the saddest and the loneliest days of my life.  Jimmy was trying to take care of Grady and I all the while dealing with Stella and Georgia at home.....He's amazing.  


What I will also say, is that the nursing staff at the hospital were my mental and emotional saving graces.  I had such an amazing experience with them.  From L&D to Mother/Baby to my NICU nurses.  So many of them would sit and talk to me, hug me, cry with me and just BE with me. Words simply can't describe how much they helped me.  These women met me in my darkest days and were there for me like they had known me forever.  Again....just no words......I will NEVER forget them.


That week, and up until now I have kept most of my friends out of my life.  I've only let a few friends "in."  And those I thank for being so patient.  I keep everything everyone has written me close....I deeply appreciate EVERYTHING.  It's been so hard to feel normal.  I feel this HUGE guilt for trying to feel normal.  It's like if I GO ON, I'm forgetting Cullen...I'm being unfair to him....The internal struggle I have is SO HEAVY.  I may feel ok one moment, then the next I'm questioning myself as to if I looked at Cullen's ears...I don't remember if I looked at his ears!  The emotional roller coaster is crazy and feels like I will never be able to get off.  I want to feel OK.  I know it's a new normal, but I just want to be able to talk, I want to be able to GO BACK!  


NOW


I take it day by day.  A lot of times, hr by hr or minute by minute.


Grady is a miracle.  He was saved by Cullen. Cullen will always be Grady's hero.   If I hadn't gone into labor when I did, I would have lost BOTH.  I HAVE to believe Cullen's distress put me into labor.  He was here to bring us Grady.  I have to tell myself that.  Right now, it's the only way I can go on each day.


I'm 32 yrs old, I have an amazing family. A wonderful, caring, sweet husband. A sweet innocent 6 yr old Stella. A smart funny 2 yr old Georgia. A 3 wk old beautiful Grady. And a guardian Angel that I know the name of.  Cullen, Mommy misses you SO MUCH.


I will try to stay positive, it's hard....SO HARD....


What's NEXT?


If you know me, are friends with me and see me getting negative....let me be. Allow me to grieve.  I'm going to grieve the rest of my life.  I will never get over this. I will make my new normal eventually.


I like talking about Cullen. Let me.  Don't ignore the fact that I have twin sons.  I know people don't know what to say....it's OK.  Who would know what to say.....it's a horrible thing that happened.  But it did.....


I'm trying to "come out of my shell"  Like most people not knowing what to say....I don't know how to act either.  Like I said before, I feel guilty for trying to be normal.....help me.


I need my friends to help me.