Our First 2 Babies, Our Angels Forever

FRIDAY
Moments after being born, both boys were taken by a team of Neonatologists and NICU nurses.  Neither Trae or I got to see but a glipse of either boy before they were being worked on in their individual isolette.  Both boys were given a drug called Serfactin to help strengthen their lungs before they were intubated and taken down to NICU in a hurry.
Since I was still going through post delivery procedures with my L&D team, I instructed Trae to go with the boys and to not leave their sides.  I knew I had family on their way to me, and I didn't want the boys to die alone, if they couldn't survive before I got to them.  It was a completely helpless feeling lying there waiting on my family, my husband gone with our sons born too early, my good friend Heather by my side in shock with me... it was if my whole world had stopped.  All the noises of the emergency in my room: the clanging of steel medical utensils, the squeeking of rubber-soled shoes running on the floor, the emergency bells ringing in my L&D unit noting all medical personnel of my emergent-situation, the beeping of monitors and the shrieks I had let out while experiencing the worst pain of my life.... it had all stopped... and what laid ahead of me was simply too much for me to grasp.

Heather, being a mother herself, stepped into a role probably only she could have performed so well.  She was responsible for communicating all my updates to friends and family since neither Trae or I was capable of speaking to more people than we had to.  She continued this role for over a week.. something I will always be grateful for.
My brother, Paul showed up first, then my parents arrived from San Antonio.  I don't remember saying much, or even crying until my Mom showed up.. I simply remember feeling.....nothing.

Mom had been rushing.  I could tell she had been running or walking very fast when she grabbed me and hugged me with force.  All the feelings I was waiting to have since yelling at Trae to stay with the babies washed over me. My Mom and Dad were here holding me, saying nothing and letting me be their child in pain.  I sit here, almost 4 months later and I remember the feeling so vividly that I was feeling in this moment: The overwhelming emotion of trauma/missing information/sadness was one that literally took my breath away.  My airway was constricted and I was gasping for air through long sobs, as my mom and dad stood next to me rubbing my back and feet.  

  I calmed down as Trae came into the room, but my body started thinking of a hundred questions as I saw my sweet husband, who normally has a grin from ear to ear, approaching me with a pale face full of worry and shock.  His sister, Carrie had just gotten here from Robinson, TX in time for Trae to tell us all what he knew about the boys status.  Trae told us he had run with the doctors down to NICU and he had to step out for the doctors to finish intebating the boys, since no procedures could be done with parents watching.  They asked him to come back to the room since shift change was coming and we would be called to rejoin the boys after.  Shift change happened twice a day. 90 minutes in the morning, 2 hours in the evening, and during this time- no parents can be in the NICU.  Trae was able to see what the boys looked like, a bit and he took a picture of each baby in their isolette for me to see. He only was told that Tristan was doing well on the ventilator, but Dr. Breed, our Neonatologist warned us that Sawyer was not accepting the medication properly and therefore not receiving the oxygen properly.  He was not expecting Sawyer to live long, unless something changed.   The information was unbelievable. Truly, we didn't believe it and couldn't believe it.  We were just getting used to the idea of being parents, the idea of losing one of them without seeing him was an idea we simply wouldn't let our mind linger on.

We started piecing together the story for my parents, Carrie and Trae's parents via phone, who were stuck in another state, trying to arrange immediate travel home. During this time, L&D moved me down to my post partum room, with our family in tow.  We met our nurses and was given post partum care instructions.  After going through the "check in" I immediately asked to be taken to NICU to see my boys.  The nurses were very concerned about my well being and urged me to rest, but I insisted, my only compramise was I agreed to stay in my wheel chair.  Dr. Breed informed us that Sawyer passed a mucus plug in his lung and was now breathing properly on the ventilator, at that point.   We stayed with the boys and asked a lot of questions regarding what all the scary beeps coming from the machines hooked up to the boys were, and what the plans were for that night's care.  The NICU nurses were so patient, answering every question we asked, even though many we were asking twice.  They walked us through acceptable things to do, to bond with the babies- despite not being able to touch them.

The boys were tiny, but perfect.  I wasn't sure what to expect, as I only knew what size they were supposed to be, according to our sonograms- but they were so much more.  Our tiny sons were perfect little boys with 10 fingers and 10 toes, all long like Mom & Dad.  They squirmed around and furrowed their brows, as the nurses adjusted them to make them comfortable,  proving their normal baby tendencies.  Their skin was red and so thin you could see thier tiny blood vessles under their skin and each heart beat, distinctly.   We opened up one of the small doors on the isolette and spoke to our boys, as soon as we were told we could, and given instruction on how to do so, safely. Trae and I told each boy how much we loved them and how beautiful they were, through our tears. We asked them to fight with all their might so we could take them home with us where we promised to show them how much we all loved them.  We only shut thier little isolette doors after we had sung our special songs to them "you are my sunshine" and the song that goes: "I love you Sawyer/Tristan, oh yes I do... I love you Sawyer/Tristan, my love is true... when you're not with me, Mom's blue.... oh Sawyer/Tristan, Mom & Dad loves you."

We were instructed to return to our room so I could rest and we updated our families. After our families left, Trae and I returned to our room and attempted to rest for a few hours between the healthy newborn cries coming through our neighbor's hospital walls. We were so scared and heartbroken about what had happened and what was to come for our sweet sons. 

SATURDAY

We met Dr. Breed in the NICU early Saturday morning to learn what updates he had on the boys.  Their first brain scan had been done and was clear of any bleeds, which everyone was very hopeful of.  Dr. Breed informed us that brain bleeds (IVH) are the most common injury in micro preemies and we weren’t “out of the woods” until we have reached 72 hours after birth.  We would continue to give the boys head scans every morning to monitor, in addition to X-Rays throughout the day to monitor their lungs. 

We spent every moment by their side, only leaving momentarily to visit the Ronald McDonald house to get water/juice and a snack when we felt we could keep it down.  The nurses urged me to eat and drink so I could breast feed, if I wanted to. We continued singing and talking to the boys constantly and leaving cloths that we would wear under our clothing for hours at a time that had our scent to it, in their isolette. These clothes were a NICU practice called "scent cloths" meant to bond baby and Mom/Dad sooner since we couldn't hold each other.   We started bonding with our babies this day. When we would sing both Sawyer & Tristan would reach out in the direction of the music, giving us a clear indication that they recognized Mommy and Daddy and loved us.. a sign we will never ever forget.  They also held onto our fingers and curled thier toes around our finger, but the NICU nurses were quick to tell us those could just be reflexes.  We didn't care- everyone agreed the babies were reaching out to us and THAT wasn't a reflex-That was love from our babies. So I just sang, and sang, and sang.

I started pumping so we could feed the boys my colostrum via their feeding tube, rather than giving them donor milk.  Due to their constant lab work, Sawyer needed his first blood transfusion late Saturday, something we were told was a very common occurrence with NICU stays and Sawyer accepted the blood well.

Saturday night Sawyers chest X-Ray showed air outside his left lung (a pneumothorax) and we had to give his neonatologist, Dr. K., permission to administer aspiration with a small needle into his chest to alleviate further lung pressure.  She kept us updated throughout the night on his status and made mention of his low platelet count, which could be indication of a bleed.  

Tristan had a “boring night” according to his nurse and Dr.’s.  His STAT’s were within normal range and his doctor seemed cautiously optimistic with his standings.

Trae’s parents got in town and saw the boys around 7 PM on Saturday night. We were all glad to have them there with us as they had been traveling since receiving the news of the boys arrival.

SUNDAY

Sunday AM the on call OB, Dr. C, saw no reason to extend my stay in the hospital for medical reasons.  I would be discharged Sunday at 11PM.

Sunday morning we went to NICU with my parents and met Dr. Breed, who came to check on the boys before the on call Neonatologist, Dr. S came on shift.   He told us that the head scans done that morning showed Sawyer with a bilateral grade 4 brain bleed and Tristan still had a clear scan showing no bleed.   We understood the Grade 4 brain bleed to be a bad diagnosis- there are no higher graded bleeds than a bilateral 4, but Dr. Breed encouraged us to wait until the next days head scan to fully understand the magnitude of the injury. He explained that Sawyer’s platelet count was low and they gave him frozen plasma to bring that count up, in addition to the blood transfusion.  Dr. Breed was optimistic about Tristan’s scan and oxygen levels and discussed possibly moving him from the ventilator to a C-PAP machine, allowing him an opportunity to breath on his own and strengthen his lungs further.

Dr. S agreed in the afternoon that Tristan’s levels were stable and encouraged us to allow him to utilize the C-PAP machine.  Trae expressed concern that the machine could cause Tristan to have a brain bleed or further issues, but Dr. S encouraged us to move forward with C-PAP stating that the ventilator the boys were hooked up to was hard on their lungs and when a baby shows positive oxygen levels for an extended period of time, it is more beneficial to try to allow them to breath on their own.  Babies who can breath on their own with help of C-PAP have a much better opportunity to become healthy, faster. 

  This news scared us, but encouraged us,  so we allowed Tristan to move forward on C-PAP.  

  We were in awe of our tiny baby boy working so hard to breath on his own- taking huge breaths and only needing small encouragements to do something babies 10 weeks older in gestation would have a hard time doing.  Despite his strong efforts, Tristan was too tired to continue breathing with the C-PAP machine and after 90 minutes, they hooked him back up to the ventilator where they could continue to administer his oxygen for him. 

 

In the process of hooking his ventilator back up, Dr. S noticed Tristan had a pulmonary hemorrhage (bleeding in his lung).  Dr. S administered frozen plasma to Tristan and gave further chest X-Rays throughout the night, which showed hazy films at the beginning of the night, then showed improvement into the morning, showing the plasma worked.

Before leaving for the night, we went over the boy’s conditions and the days events with Dr. S and the NICU nurses.  Earlier in the day, Dr. S and Dr. Breed had no intentions of giving Tristan a head scan since he had 2 scans show up clear.  Dr. S explained to us that since Tristan had the pulmonary hemorrhage, he was going to order a head scan.. just to be safe.

Trae and I left NICU that night, gathered our items and headed home to our house. It was a horrible feeling leaving our little babies behind fighting so hard when they were supposed to be coming home with us.  We were so heartbroken and worried and couldn’t wait to get back to the hospital to see them.

MONDAY

We arrived to the NICU Monday morning and met the on call Neonatologist: Dr. M.  It was 11 before she had news from the pediatric radiologist on the boy’s head scan, but asked us into a private room to discuss the news when she did receive the information.  I remember my body feeling like it was burning, like literally on fire as I walked back to that room.  I knew this information was going to be very important, and likely bad and I didn't want to go. 

Trae, me, our immediate family, the boys NICU Nurses, Nurse Supervisor and Dr M all met in a private consultation room to discuss the boys health update. 

Dr. M explained that Sawyer’s scan showed no difference- he still had a bilateral grade 4 brain bleed, that both she and the pediatric radiologist were concerned with.  Tristan’s brain scan now showed a grade 2 bleed on his right side and a grade 4 brain bleed on his left side.  Dr. M began to explain the differences in the different brain bleeds… that grades 1-3 were in different ventricles, but grade 4 brain bleeds were in the brain tissue itself and meant permanent damage for the child.  There is no alleviating the bleed, and no understanding the full magnitude of what the bleed will ultimately mean for the child until much later.  She explained the challenges the boys would face as 23 week old babies without the brain bleeds, using words like Cerebral Palsy, develeopmental issues, possible infection and heart surgery in the upcoming months.

Dr. M told us that the boys were very sick and we needed to make a decision on how we were moving forward.  We listened to the options regarding the boys continued care and our options for discontinuing care and how the NICU would help ease either option for us.

Aside from being heartbroken, Trae and I felt confused.  How were we discussing our boys lives when mere days ago our hardest decision was what we were having for dinner?  My pregnancy had been a dream!  We were so excited about bringing home our twins and were almost finished preparing our home for them, as early as it was!

We told Dr. M we weren’t ready to give up on Sawyer and Tristan.  We needed to see the head scans and asked her to go over them with us.  She understood and agreed to go over them with us later that evening.

Trae and I went home with our families, discussed all possibilities and prayed for answers and miracles.

Trae and I went up to the NICU later after shift change and saw the scans with Dr. M.  We understood the magnitude of the scans by seeing them in front of us, but didn’t know whether to have hope for either boy.

We called Dr. Terwelp our pediatrician to ask him his opinion and he said he would go by to see the boys on Tuesday and to talk to Dr. M.

TUESDAY

Both boys continued to have blood transfusions, frozen plasma, chest X-Rays, head scans and my milk for their small feedings.

Tuesday’s head scans came back unchanged on both boys.  Trae and I had another private conversation with Dr. M, just the two of us to understand the updated status and ask additional questions.  We asked to talk to a pediatric neurologist and/or radiologist in person so we could understand the boy’s head scans and what it meant for them long-term.   Dr. M agreed we should get a second opinion from a specialist and reiterated the concern both she and the other neonatologists had regarding the boys future.

Dr. Terwelp called after seeing the boys and agreed with the neonatologists record of their current STAT’s and challenges they faced.

Dr. K, the boys PM Neonatologist helped us set up an appointment Wednesday morning with a pediatric neurologist at Dell Children’s, named Dr. Keough.

We continued spending time with the boys: singing to them, praying with them and asking the boys to help Mommy and Daddy make a decision for them.  We made sure to tell them how much we loved them, how proud we were of them and how hard they were fighting for Mommy and Daddy.

We made an appointment with our Pastor for Wednesday after we saw Dr. Keough.

WEDNESDAY

Trae and I woke up early for our 8 AM appointment with Dr. Keough.  The Doctor walked in and immediately started addressing our concerns with Sawyer and Tristan’s head scans.  

We asked hard questions about what their futures held.  Trae and I were comfortable with not having the “perfect children”.. we discussed working with wheelchairs, physical therapy and occupational therapy.  We discussed both boys being mentally challenged and being committed to their care.  Overall, as parents who love our children unconditionally we want the BEST for them and what this meant to us, was a life where the boys could have a level of independence for themselves.  We needed to know that eventually the boys could complete daily tasks  on their own, and live on their own one day.  The neurologist told us several times that Sawyer would not have this opportunity, and that Tristan’s condition would be very severe as well.  The only “grey area” was Tristan’s grade 2 bleed on his right side… but that his grade 4 was severe enough that any skills he had would be greatly diminished .  Our hour long meeting with the neurologist ended with her saying she probably wouldn’t continue care if they were here children and that one of the worst things she has to see on a day to day care are the children who have life behind their eyes but can’t walk, talk, or communicate to give their message to their parents. We couldn’t imagine seeing our son’s in that condition.

We left the Dr’s office in tears- almost fainting with severe grief, unable to walk properly out of the office. We were completely heartbroken with the reality of the situation and unable to imagine how we were going to survive the decisions that laid ahead of us.

We met with our Pastor at our church after the Dr.’s office.  We discussed our options and what the Doctor told us.  Our pastor told us that GOD wanted a life full of abundance for every child of his.  This spoke volumes to Trae and me.  Our children weren’t going to have a life of abundance if we continued to push forward. They were going to have a very challenging 4-5 months of NICU stay and IF they survived the impending surgeries and other challenges they had ahead of them, the life we were pushing for AT BEST would be met with full time support for most or all of their life.  What would happen to them when we left this world? What would happen for our future children’s lives if having to support 1 or 2 severely handicapped children?  What would happen to our marriage if we supported our children’s care for life?

The pastor mentioned the Poem “footprints” and how he saw an alternative version saying “GOD, why is there only 1 set of footprints? GOD replies “because that’s where I carried you kicking and screaming to the right answer”.  Trae and I felt like we needed GOD to carry us kicking and screaming…. to which our Pastor said “maybe he is”. 

  Had the Neurologist given us the answer we had prayed for?  We discussed taking the boys off life support with Pastor and asked him to be on call. We wanted the boys to be baptized again with holy water and have him there to support our family.

We left for the NICU to see our boys and talk to Dr. Breed who was the attending for the day.

We met with Dr. Breed and the nurse supervisor privately to discuss the appointment with the neurologist .  Dr. Breed agreed with all the news Dr. Keough gave us regarding the boys future and said that he couldn’t tell us what he would do in our situation, but could tell us what he would tell his daughter, who is our age.  He said he would make sure to emphasize the many challenges the babies would have in front of them to his daughter and reiterate the quality of life that the boys would probably never have.  He empathized with our terrible decision in front of us and said to make whatever decision we found peace with.

The boys had no head scan on Wednesday, but were scheduled for a scan on Thursday morning.  We told Dr. Breed and the Nurse that we were leaning towards discontinuing support and we wanted our pastor and family to come say “goodbye” to the boys Thursday morning.  We would not sign any papers regarding discontinuing care until receiving the head scan on Thursday morning, despite no one telling us it could change for the better.

We asked the Nurse Supervisor if we could stay in the family room so we could spend as much time as possible with the boys and got set up for the room.

We came home to pack a bag and tell our family to be prepared for the following morning- our Dad’s had left and they needed to travel back to Austin to say goodbye.  We told everyone to meet us at NICU at 9 AM, and we left for the NICU.

            Trae and I spent from 12-3:30 AM loving on the boys, changing their diapers, helping the nurses however we could. The nurses took pictures of us holding the boys in our hands.   They slept like any normal baby would in their parents arms… just in our hands, still hooked up to all their tubes. Sawyer crossed his legs and rubbed his feet together and grimaced in his sleep, just like Trae does. Tristan kicked his legs and stretched out his arms while sleeping peacefully.  The boys looked so peaceful and calm in our hands- something the nurses couldn’t believe they let us do for so long.  It wasn’t until I was literally falling asleep with my son in my hands that we left to get a couple hours of sleep.

We laid in the hospital family bedroom that night begging for a miracle, but asking for a clearer sign for the decision we needed to make for our boys. We talked to GOD a lot that night, until our bodies pulled us into a sleep, we could no longer avoid.

THURSDAY

Our family arrived with the pastor around 8:30.  Trae and I woke up in a daze and feeling ill. We couldn’t believe what we were about to do and wished for any other situation.  I expressed to my pastor that it felt like we were going to be killing our children and he asked “aren’t you saving them?” 

We walked into the NICU, which had been closed down to other families because of our situation.   We allowed Pastor Pete to bless the boys with holy water and pray for their passing.  Trae and I then stepped away so our families could say what they wanted to, to Sawyer and Tristan without us being there.  

As our family left the NICU we went to see the boys and talk to Dr. Breed.  Dr. Breed had just gotten the head scans back and said Sawyer’s scan was unchanged, but Tristan’s scan came back this morning with a bilateral 4 bleed.  His grade 2 had changed into a 4 overnight and his heart murmur was more apparent showing a need for a PDA heart surgery in the near future. 

Trae and I felt at peace with our decision at that point. We felt Tristan and GOD had given us another piece of information, giving us peace with discontinuing their life support. 

We spent time with the boys talking with them, singing with them and praying for them.  Those words we said to them were the hardest words we've ever spoken.  How do you say everything you need to say to your child in minutes or hours?

After signing the necessary paperwork,  we asked the boys to be handed to us unswaddled so we could experience skin to skin time with them, while they had their last moments.

The boys were unhooked quickly - I was given Sawyer and Trae was given Tristan.   The boys looked at peace.  The twins had shown little grimaces to us in days past while changing diapers or wiping their faces, as any babies do- our babies did not show us these grimaces during this time.  Instead , they looked at peace and comfortable on our skin.  Their skin that only 6 days earlier was bright pink, was now turning olive complected- and normal like normal new born skin.  Thier eyelashes were so long and their lips were perfect as they pursed together in a perfect baby pout.

Trae and I sobbed while rocking our babies in the rocking chairs we were sitting in.   We kissed their heads and fingers and toes and began to sing “the Eyes of Texas” as we noticed every nurse and Dr in the NICU surround around us, singing the song along with us.  We must have had 20 people singing along with us, sharing their love and tears for our little boys. 

Trae and I switched the boys so I could hold Tristan and he could hold Sawyer during their final heartbeats.  We held them tight and told them how much we loved them and when their heartbeats began to slow down we whispered how proud we were of them for fighting so hard for us in the past week and how sorry we were that we couldn’t take them home.  We told them we would never, ever forget our first two children and that they could stop fighting for us… that it would be OK and we would see them in Heaven.  We needed our son’s to know that it was ok to go, that we would be OK… that we loved them so much and would see them again.

The boys hearts stopped beating within moments of each other and both were pronounced dead at 12:15PM.  

We stayed with our boys for a few hours.  Despite being completely heartbroken, there was a sense of relief and calmness that washed over us.  During this time, the small NICU windows above the boys isolette's started beaming with sunlight pearing through the clouds that had been looming for weeks.  We held our babies in this light and imagined the life they were beginning together,  in Heaven.