January Mighty Bee

by | Jan 14, 2016 | Blog, Mighty Bees | 1 comment

Mighty Mom: Tricia Asbra

Mighty Family:

Aaron (dad), Tricia (mom), Andrew (11), Benjamin (11), Kate (8). Grandma and Papa also live with us.

 

Tricia, tell us first learning you were pregnant and your pregnancy? 

We were just getting ready to celebrate our first wedding anniversary when I started feeling dizzy and nauseated. I figured I was just getting sick, but then a co-worker suggested I take a pregnancy test. We had decided to go off birth control about a month before, but I was told that it should take me several months to a year to get pregnant. I went home and took a test and it IMMEDIATELY came back positive.

We were so excited! We went to my first appointment with my OBGYN and they told me I was VERY pregnant and likely much farther along than I thought I was. My hormone levels were significantly higher than someone who should have been only 6 weeks pregnant. Because of all of this, they sent me for an ultrasound a week later. During that ultrasound, I was complaining to my doctor about all of the severe pregnancy symptoms I seemed to be having: bad any-time of the day sickness, already out of my regular clothes and quickly outgrowing my first set of maternity pants.

She said, “Let’s not talk about ‘normal’ for a second. There’s one heartbeat, there’s two, and there’s a third!” It was at that point that I saw all three babies up on the ultrasound screen for the first time. I was having spontaneous triplets! After their birth, we found out that all three were identical. The rest of the pregnancy was miserable. I was throwing up several times a day until the week before they were born and was on modified bedrest and off work from 18 weeks because of the strain that three babies was putting on my body. I was diagnosed with hypermetabolism, which caused my resting heart rate to be in the 90s to compensate for the increase in blood needed to carry them. Even though I was allowed to get up and move around as long as I stayed relatively sedentary throughout the day, it was a struggle. I was very uncomfortable. By 26 weeks, I was measuring at 42 weeks. I had ultrasounds every week to check on the progress of the babies. There were several times that I ended up in labor and delivery for braxton hicks contractions, but I never went into labor. They were just overly cautious with multiple birth pregnancies.
Did you deliver at Novant/then Presbyterian? Were you familiar with the NICU prior to your boys?

I delivered in CA at Kaiser Fontana hospital. We were actually supposed to tour the NICU the day that the boys were born, but ended up getting a first hand experience before we made it to the tour.

Tell us about the boys’ birth and the emotions surrounding this day.

On the day that the boys were born, I woke up and noticed that baby A (A.J.) was not moving as much as he normally did. Knowing that I had an ultrasound and OBGYN appointment in an hour, I decided to get up and go and let the doctor know once I got in there.

I was already told at my appointment the week before that they were getting crowded and that I would probably notice a slight decrease in movement in the coming weeks. I had also been into labor and delivery less than 48 hours earlier for mild contractions and everything was perfect there. This was my very first appointment with the perinatologist in preparation for my boys being born at the hospital that was farther from my house, but had a better NICU. We always knew that they would come early and were told to expect them around 34 weeks and that they would have a short hospital stay if everything went well. My body seemed to be doing fine even though I was miserable and nobody anticipated them to come earlier than that 34 week mark.

My appointment was at 11:15 am. I remember that they were running a few minutes behind as usual, but that I was excited to meet my new doctor and tour the NICU after my appointment. We went into the room to have the ultrasound with the perinatologist and were talking and joking with the nurse as the doctor began the ultrasound. We noticed that he got a little quiet while looking at the boys, but he seemed to just be concentrating. A few minutes after starting, he looked at us and said, “This is the situation. Baby A’s heart rate is very low, around 80. I’m not sure what is going on, but the choice is to let Baby A die and give the other two babies longer to develop or we deliver all of them now to try and save him. They are 26 weeks, so they have a good chance of surviving. If I can get them out in 30 minutes, we can probably save him.” My heart sank at the news, but both my husband and I agreed that we deliver all of them now in an attempt to save A.J.

The doctor’s office was across the street from the hospital, so my doctor told us to get up and run over to hospital and told his nurse to call them to let them know to expect us and prep the OR. We went over as quickly as we could and went up to labor and delivery. It was all very quick. People were in and out of the room while hooking me up to an IV and getting me ready for the emergency C-section. I asked my doctor to please let me stay awake so I could know what was going on and he told me that as long as I did everything I was told and went as fast as possible that I could stay awake. I did and I am very glad that for that. We went into the OR where I had to “hop” up onto the table and position myself for the spinal while 3 teams of neonatologist and nurses prepped three isolettes and the doctor and his team prepped for the surgery. They layed me down seconds after the spinal was in place and said, “Can you feel this” and they scratched my skin with what looked like a paper clip right under my ribs. As soon as I said, “It’s getting tingly,” the doctor said, “Let’s make the first incision.” Terrified, the c-section started.

As the babies were being born, I remember him saying, “Baby A is very pale, but moving. Baby B is very dark. Baby C is also very pale.” I had no idea what this meant, but the teams went to work to save all three of my boys. They were born at 12:04, 12:05, and 12:06, about 45 minutes after my scheduled appointment. About 20 minutes later, one of the neonatologists brought A.J. to us to hold. He had passed away and their attempts at resuscitation had failed. In the meantime, both Andrew (baby B) and Benjamin (baby C) were fighting for their lives. Evidently, a rare complication had occurred where the blood flow at some point in my pregnancy had changed. Two of my boys were donating all of their blood to the third. A.J. and Benjamin were donors, Andrew was the receiver. Benjamin had an extremely low hematocrit level. His blood looked like water with a little pink in it. Andrew’s hematocrit level was twice what it should be and was thick and red.

We were told that had we been 30 minutes later that we would have for have lost Benjamin as well and if we were a couple of hours late, we would have lost all three. Our decision to try and save A.J. actually saved Andrew’s and Benjamin’s lives. Had we made a different decision, all three boys would have died. About 10 minutes after getting into the recovery room, a nurse from the NICU came in and told us that they were losing baby C (Benjamin) and that he needed a blood transfusion immediately. Within minutes after that nurse came in, my OBGYN came in and told us that they were able to get blood into him and that he had somewhat stabilized.

When was the first time you had a chance to meet and/or hold the boys?

Read Part II of the Asbra family’s journey next week…

Continued Interview with Tricia…

 

When was the first time you had a chance to meet and/or hold the boys?
I got to meet the boys right after my recovery (about an hour or so later). They wanted me to name them and see them and explain that they were both really sick. We didn’t actually get to hold them until they were a month old and off the ventilators. They were so medically fragile that even touching them would cause them stress.

Tell us about your journey in the NICU. What is it like to care for two babies? How long did you stay?

 

The NICU experience is one that I will never forget. The first few days were absolutely terrifying. We had to say good-bye to Benjamin several times in the first 3 days. I remember not even 12 hours after their delivery, a nurse came running down the hallway to my room to tell me that they were losing Benjamin. I was still hooked up to everything from my c-section, including my catheter, and hadn’t even stood up yet. My nurses were doing their changeover and were at first not understanding the severity of the situation. Aaron went to get me a wheelchair and we were determined to get there by ourselves when the charge nurse came in and helped me out of bed, into the wheelchair, and pushed me off to the NICU.
We walked in and scrubbed up and saw about 10 professionals surrounding him. All of his alarms were going off and I could tell that everyone was frantic. I didn’t know what any of the numbers meant yet and was terrified. Within a few minutes of me coming into the room, however, he began to stabilize. I was amazed at how complete chaos turned into complete calmness within minutes. Professionals started leaving his bed one by one with only the head neonatologist and the respiratory therapist still watching his numbers closely. I stayed for several hours by his bedside and he stayed stable during that entire time.
Eventually, I went back to my room. I was told the next day that as soon as I left, his numbers started going all over the place, but they wanted to try and let me rest and recover, so they decided to not get me. His kidneys had started to fail, so Benjamin quickly swelled up like a balloon. His skin was weeping because of the excess of fluid and there was bruising over all of his body. He couldn’t tolerate a normal ventilator at first, so he needed an oscillator and a specialized isolette (the hospital only had 2 of them at that time) that controlled his entire environment. They told us that if his kidneys didn’t start working by the third day, that there was nothing they could do for him. He was simply too sick.

We put him on prayer lists throughout the country in hopes that God would do what the doctors could not. On the third day, he peed! He produced .5 cc of urine and it was the one time in my life that I was so incredibly excited to see urine! We even took a picture of it to document it. That .5 cc was enough to begin to save his life. Within the first week, we also were told that Ben would have to have a PDA ligation (heart surgery) to fix the hole in his heart that all preemies are born with. They were able to use medication to close Andrew’s, but the medication affected the kidneys and Benjamin’s kidneys were just too fragile at that point to handle the medication. We had a few hours to make the decision on whether or not he should have the heart surgery. After researching and understanding the severity of the situation, we agreed for him to have the surgery. Within hours of having the surgery, he was able to come off of some of his medications and was finally not needing constant blood transfusions.

Jan BoysInNICU

Andrew’s first week seemed uneventful compared to Benjamin’s, but was nonetheless a roller coaster. Some days, he was stable and some days he was very much not. He was also completely bruised head to toe from the blood issues that caused their premature birth. He had several blood and platelet transfusions to help him. His PDA closed with medication, so no heart surgery was needed for him. He also swelled up, but to a much lesser extent than his brother.
At one week of age, both boys were diagnosed with a Grade III IVH (brain bleed) with hydrocephalus. Bleeds are extremely common in preemies under the gestation of 29 weeks. Grade I is the least severe and grade IV is the most severe. They both had grade IIIs on both sides of their brains. Benjamin’s bleed began to dissipate on its own and stayed stable, but Andrew’s seemed to be getting worse over time. We were told that the neurosurgeon was going to place a tap to relieve some of the pressure on his brain, but when he went to do it later that day, some of the hydrocephalus has gone down, so he decided to wait. We were told to expect a shunt in the following weeks, but the hydrocephalus dissipated on it’s own and the bleed stopped. At about a month old, they were also diagnosed with retinopathy of prematurity. Ben’s had to be corrected with laser eye surgery, but Andrew’s stayed stable enough that he didn’t need it.
After the first month, things went much much more smoothly. Suddenly, our stay was no longer about saving their lives, but about them learning to eat and growing. They came off their ventilators at a month old and were on oxygen. About 2 weeks later, Andrew was on room air and was in the process of getting ready to come home. Benjamin was struggling with learning to eat, but also came off the vent and then oxygen a few days behind Andrew.
Right after their two month birthday, we were given the OK to take Andrew home. I remember how stressed I was that day knowing that Benjamin had to stay behind and that Andrew was coming home with no monitors. I had grown so accustomed to looking at the once foreign numbers on the screen to see how he was doing that it was very intimidating to have him come home “wire free.”
The month that Andrew was home and Ben was in the hospital was a stressful blur. Benjamin needed one more surgery during this time period to fix a hernia. Aaron worked during the day while I took care of a colicky, reflux-ridden, low-immune system Andrew. When Aaron got off work, I would hand off Andrew to him and then drive 45 minutes to the hospital to stay with Benjamin through the evening hours. Finally, after a month and after having a different doctor suggest taking out his feeding tube before his bottle feedings, Benjamin learned to eat. 24 hours later, he came home, just in time for his original due date.

 

Can you tell us about the day you were told about Andrew’s diagnosis?

 

We were warned when the boys were in the hospital that the brain bleeds that they had could cause Cerebral Palsy, but that we wouldn’t know for sure until they were closer to 18 months old. At all of their check-ups and evaluations during their first year, they were found to be developing at their adjusted age as expected. They seemed to be doing great! They were both sitting independently by 1 year (9 months adjusted) and were beginning to army crawl. We were very hopeful that they had made it through without any lasting effects. However, when they were about 18 months old, we started to notice involuntary muscle contractions called clonus in Andrew’s legs. Neither boy was walking yet and they had both just begun physical therapy. Clonus is a sign of spastic cerebral palsy.
We decided to make an appointment with the doctor that specialized in children with cerebral palsy. Even though we knew the diagnosis could come and that he was showing signs, I remember the diagnosis hitting me hard. I cried and held Andrew on my lap while the doctor was explaining to me that it was mild-moderate spastic diplegia. It mainly affected his legs and that we needed to continue physical therapy to maximize his chances at walking. I remember taking Andrew out of the office and feeling like he was never going to be able to do anything. I felt like he was never going to walk or talk. I was completely irrational because as I am thinking this, I look down and realize that he is gesturing to something and then doing the sign for it at the same time. Once I saw him do this it hit me that he was already doing a lot of what the doctors originally said he wouldn’t be. So, I began my research into cerebral palsy and the treatment options available.

Not surprisingly, Benjamin was diagnosed with mild cerebral palsy about a month later. He was already pulling to stand and showing signs of walking, but was definitely starting to show signs of delayed development. His CP seemed to be affecting speech and motor planning with mixed tone throughout his body rather than causing spasticity in just his lower extremities. Having just gone through the diagnosis with Andrew, I felt much better prepared to accept it with Ben.

Did you have any memorable doctors, nurses, specialist that gave you hope throughout your journey?

 

YES!! The NICU doctors and nurses were spectacular. I could not have survived the NICU experience without them. They were my family during those 3 months. My sons are literally alive because of them. I keep in contact with one on Facebook and am saddened that I didn’t keep in better contact with everyone. They will never know just how grateful I truly am.

 

What was it like to have everyone under one roof?

 

The first year of the boys being home was crazy! They were on a strict “eat around the clock every three hours” schedule in hopes that they would gain weight, and I was still trying to pump for them to help with their underdeveloped immune systems. They were terrible eaters, so it would take sometimes 45 minutes to an entire hour to feed just one of them. Andrew also had bad reflux, so sometimes after taking an entire hour to feed him, he would vomit up everything. I would then have to clean him and me and sometimes the furniture up and start the process over since he couldn’t go without the lost calories. They were on several medications and a combination of breast milk fortifier and preemie formula, so bottle preparation was a significant chore.

They were told to not be around any animals, other children, or people who could be sick, so I was not able to get a lot of help with them during that time. My schedule was feed Andrew, feed Benjamin, pump, sleep for 30 minutes, repeat…around the clock. Aaron would help with one feeding in the middle of the night so I could get a couple of hours sleep. Once they were about 5 months old I was able to feed both of them at once and was very grateful when I was suddenly able to get an hour or two of sleep at a time. Around 6 months, they became much faster at eating. At 9 months, I gave up on the pumping and finally had permission from their pediatrician to let them skip a nighttime feeding since they would usually sleep through it anyway. I look back now and don’t know HOW I did it. It was crazy.

What were the months like following the NICU? How did you manage therapies, equipment and appointments?

 

We had doctor’s appointments weekly for the boys (sometimes several in a week) in the first few months following their release from the NICU. In-home therapies through our early start program started when they had been home for about 6 weeks. Like everything during that time period, I just did it. The hospital with the specialists was about 45 minutes to an hour away. Everything revolved around their feedings, so I just planned accordingly. It was tough, but necessary. I remember being exhausted by the appointments and the boys’ normal day to day care and was saddened that I was missing so much of their babyhood by having to take them everywhere. They were also on strict orders to be in isolation except for doctor’s appointments. That was the hardest thing for me. I am used to doing stuff all of the time and suddenly I couldn’t go anywhere. When they were 9 months old, their doctor gave them the all clear to go out in public if they were in their own carseats with a blanket over them. I remember how excited I was to take them to the grocery store or Target.

They didn’t really need any specialized equipment until they got a little older. In CA, they have programs that allow you to borrow equipment like standers, walkers, gait trainers, etc.. When Ben was about 2, we borrowed a walker as a way to make him feel more secure. He only used it for about 2 weeks before starting to walk on his own, so I was glad that we didn’t have to purchase one. Around that same time, we were borrowing a gait trainer and stander for Andrew. Leg braces and glasses were not covered by our insurance, so we saved up to pay out of pocket for those. Therapy was also not covered by our private insurance, but the boys qualified for 2 early intervention programs that covered their therapy until they turned 3. The only therapy that wasn’t covered was feeding therapy for Benjamin, which we paid for out of pocket. It was ridiculously expensive and didn’t seem to be helping, so we stopped soon after we started. We moved to Charlotte right after their third birthday

 

Did you have the opportunity to experience a full term pregnancy with your daughter? If so, What was it like to leave the hospital with your baby? Many families are terrified to try again after having a traumatic birth experience. It is such a personal choice. Tell us how you moved through that decision making process and how you found strength through fear during your pregnancy.

 

We wanted to have more kids, but were planning on waiting until the boys were a little older since they had just been diagnosed with Cerebral Palsy. However, when they were 2, I found out that I was pregnant with Kate. She was very much a surprise. I had a very high chance of having multiples again, so I was terrified that I was pregnant with twins or triplets.  I called my OBGYN and she got me in that day for an ultrasound. We confirmed it was just 1 and I was expected to have a low-risk pregnancy. I was terrified throughout the entire pregnancy. Even though the experience was soooooo much easier (I wasn’t even sick!), I was convinced that something bad was going to happen. Every time I hit a weekly milestone, I celebrated. When I was 26 weeks, I became entirely stressed. In the meantime, we also moved away from all of our family and friends in CA to Charlotte, NC. I had to start over with all new doctors for everyone and had the stress of adapting to an entirely new area. However, I soon made it to 39.5 weeks.
My grandma had just gotten picked up from the airport to watch the boys, and my c-section was scheduled for early the next morning when I started labor with her. I freaked out and insisted that I go into the hospital to be monitored even though I was in just the very beginning stages and was assured I could stay home until my c-section time. I told the doctor on the phone that I had already lost one baby and that I was not doing it again. The doctor on call may have thought I was a little crazy (I probably was), but she agreed to let me come in to be monitored until the next morning. Because I was freaking out and just at the beginning of labor, they were able to give me medication to help me sleep through the night. Once in the OR the next morning, I started to have a panic attack and it took quite a while for the nurse to get me calm enough for them to do the c-section. Kate was born with no complications and was able to come home 2 days later. It was a completely different situation and so much less stressful. I remember when they needed to check her blood sugar and check her for jaundice and they apologized that they would have to do heel pricks to test her blood. I literally started cracking up and said, “Heel pricks?? I prayed for just heel pricks for my boys.
One of our first decisions was whether or not to place a central line.” I’m entirely sure that everyone thought I was crazy. To be honest, I couldn’t imagine our lives without Kate. She is an amazing little girl and is fantastic with her brothers. It also made me realize that not everything is quite as traumatic. Her hospital stay was easy and her babyhood was a piece of cake compared to what I went through with the boys. I sometimes even felt bored! She ate, she slept… then what? And, this amazing thing happened… she just developed on her own. She sat up without hours of therapy, she was eating table food at 6 months (Benjamin was on baby food until he was 3), she talked early and walked at a normal time.

I am entirely grateful for being able to experience a normal pregnancy and baby. The stress was so much less. There are even times that I wish I could have another one, but then remember that I have a high chance of having at least 2 in any pregnancy and then feel content with my family being done.

What are some of the things (both traditional and alternative) that you have done for your boys? 

 

We have done a ton of different things to help the boys. We have done two rounds of hyperbaric oxygen therapy with fantastic results and a 9 week conductive education program back in CA (we travelled and stayed with family for the 9 weeks). We have also done the traditional physical therapy, occupational therapy, speech therapy, feeding therapy, and music therapy since they were very little. With Andrew, we have tried Botox injections. He had a bad reaction on his second round that caused about a year of gross motor regression, so we stopped those. When Andrew was 8, he had his first hamstring lengthening surgery. He made good progress at first, but then halted once they started to get tight again. Most recently, in November 2014, he had Selective Dorsal Rhizotomy (SDR) with the worldwide expert, Dr. Park, in St. Louis, MO followed by PERCS lengthening of the hamstrings and heel chords in April 2015. This permanently reduced his spasticity.Tell us how you found Bee Mighty and how it has helped Andrew! How is he today?

After his SDR surgery in November of last year, it was prescribed that Andrew have 5 days of physical therapy for a year and then 3 days for the following 6 months-year. Our insurance doesn’t even come close to providing all of that therapy and we have a significant co-pay for each session. Bee Mighty paid for his physical therapy!
Because of Bee Mighty, he was able to get the needed PT and has made TREMENDOUS progress. A year ago, Andrew as in a wheelchair and crawled as his main source of mobility. He is now using a walker full-time and is transitioning to using crutches full-time. He wouldn’t have been able to make that kind of progress without the intensive PT.
Both Ben and Andrew have a secondary diagnosis of high-functioning Autism. This was in part due to their brain bleeds and in part due to undiagnosed strokes (for both of them) that happened sometime right after their birth. They are doing well though despite this. Andrew is in a regular class and has made honor roll a few times in the last couple of years. Benjamin is in a social skills/Autism class and is also doing very well. He composes music and has since he was 5! They both still have issues that they are working through, but I am amazed at what they have achieved in the last 11 years. They amaze me daily.

 

What would you recommend to other families that are new to the NICU and just beginning this journey?

 

It gets better and is totally worth it. It’s hard when you are in the thick of it, having your dreams of a “perfect” delivery being altered dramatically to see beyond and into the future. But, even with scary medical problems and diagnoses, they are still babies starting out their story. Having preemies is scary. It’s hard to see beyond the wires and the machines and realize that there is a baby in there. It’s YOUR baby. It’s not the hospital’s baby. However, respect that your doctors and nurses know best how to care for a preemie and follow their lead. But, ask questions and research everything. Know what everything is so that you can make informed decisions.
There will be times that you will find doctors that you don’t like or are not good fits for your kids. It’s ok to change doctors. It’s ok to ask questions and have discussions. Don’t let the doctor’s opinions or warnings that “they’ll never do this” scare you from pushing them to achieve all they are capable of.
Most importantly, take PICTURES and VIDEOS. You will want to remember their beginning. They’ll want to hear about it. My boys tell everyone about their birth and NICU stay and will tell their whole story with baby book in hand if you let them. They are ok with it. It’s part of their lives and isn’t scary to them because they’ve always known it.

1 Comment

  1. Gretchen
    Gretchen on January 28, 2016 at 1:45 am

    I have worked in both the NICU and Labor and Delivery at the Kaiser Fontana hospital. And they are both AMAZING units and I would not think twice about delivering there if I had another child. I know they did everything in their power to ensure a safe delivery. Unfortunately not all micro-preemies make it. I am so sorry for your loss of AJ, it’s heart breaking. My condolences to you and your family. I am sure he is watching over his brothers right now. I’m praying for little Benjamin and Andrew, that they will be able to come home to you in due time. Just know that you have a great team of doctors and nurses there and they will do all they can for them. Your boys are in wonderful hands. Just just know everything that can be done will be done as long as it is possible. The staff there will care for them as if they are their own children.