Special thanks to Melody for sharing her Trevor with us today!  What a cutie!  What a miracle! 

Trevor was born weighing 490 grams ( 1 pound 1 ounce), 11.5″ long.  My pregnancy was “doomed” from the very beginning.  We were told to expect a miscarriage on more than one occasion due to a blood clot behind the placenta.  He stopped growing at 22 weeks 4 days but he made it to 26 weeks before falling into distress. He was taken by c section on October 19, 2009.  We were given very little hope before delivery and even asked if we would like for him to

receive “comfort care” instead of resuscitation. I chose to have them do everything in their power to save my son.

Trevor suffered a brain bleed that progressed into Cystic PVL. His prognosis was not good. We were told he could be blind, deaf, mentally challenged, paralyzed, or all of the above. We were also told to expect a CP diagnosis later on due to the severity of his neurological injury. He had multiple other complications including PDA surgery at 2 days old, paralyzed vocal cord, Atrial Tachycardia, and the list goes on and on.

After 102 days in a NICU 2.5 hours away from our hometown, we brought our miracle home. His story is amazing because he not only beat the odds and survived, but he overcame statistics and has NO problems remaining due to his severe prematurity. His last MRI revealed a perfect, normal, healthy brain. There were no holes, no cysts. He is 2 years old, and just the perfect picture of health! His complete story is at www.trevorwadecampbell.weebly.com if you would like to see more. I have a few Youtube videos there, pictures, slideshow, and NICU journal. I just want parents to know that a PVL diagnosis does not mean CERTAIN disabilities, like we were told.

Miracles DO happen, and my baby is proof

I “met” this sweet miracles Mom in one of my Preemie Mama groups.  I highly suggest getting involved with an internet preemie mom group; especially, if you don’t have a local group of your own.  There are a ton online and on Facebook especially.  Honesty, each group has a different dynamic and you’ll have to filter through to find your match or matches; however, through these groups, I’ve found an elite and intelligent group of ladies to whom I now consider to be friends…although, we’ve never physically met.  Friends who’ve been there.  Friends who understand the daily struggles and juggling of medications, breathing treatments, hours of therapies, and doctors appointments.    Friends who know you’re not crazy for keeping your baby hidden for 6 months during the Fall and Winter.  Friends who understand what “feeding the bed means.”  Friends who understand why your baby really can’t eat.    We’ve all walked different paths, none the same, but we can still say, we understand.

So without further adou….Meet precious Bella (Since this was written, Bella as already celebrated her 1st Birthday!!  So, HAPPY BIRTHDAY sweet girl!!)

Where do I begin?!  I’m still in the grieving stage, even though my precious miracle is turning 1 in less than 2 weeks. Even though putting Isabella’s story into words is difficult and very emotionally trying, my hope is that I can give just one preemie parent a glimmer of the light at the end of the tunnel, or to just know that they are not alone! I have met so many amazing preemie parents online, and I am so grateful to have other Mommies to help support us on our journey.

My husband and I found out we were expecting November 17^th, 2010…almost a year after we were married. Call it a “mother’s intuition”, but by the time I made it to first OB appointment at 6 weeks, I knew something was off. I had asked for an ultrasound, because it was way too early to hear her heartbeat via the Doppler. I was told there wasn’t any reason or valid justification for it, and I needed to wait it out.

Right around 8 weeks, we went to visit family for the Christmas holiday, I began hemorrhaging severely. I absolutely believed I was miscarrying, and I was completely devastated! It was a 30 minute drive to the hospital, and the whole way I prayed. “Please God, don’t take our baby from us! She needs us, and we need her!!” (I always knew in my heart she was a girl!) I was terrified of hearing those words, that we had lost her and there was nothing they could do. I was so elated, and surprised, when the ultrasound and blood work revealed that Bella was still inside, and doing well!

I went back to work that week, and within a few days I was hospitalized again for more hemorrhaging. Needless to say, by week 10, I was on permanent do-not-move-off-the-couch-or-clean-or-cook-or-do-anything-at-all bed rest. I was absolutely horrified! I kept trying to find reasons, or some type of cause as to why this was happening to us! I was later diagnosed with having several subchorionic hemorrhages, which basically means chronic placental abruption. I was told by every doctor that there was no rhyme or reason to them, it was completely random, and most of all beyond my control. There was nothing I could have done to predict or prevent them.

During my pregnancy, I had an extreme amount of blood loss and abnormally low blood pressure. I’d seen it get as low as in the 60’s. I was extremely sluggish, and getting up to use the restroom was a workout. I spent at least half of my pregnancy hospitalized, hooked up to monitors, receiving medications, and eventually receiving a blood transfusion. (My blood count was at a 7, and for a pregnant woman it should have been 14+.)  Most of my family and friends (and my doctors!) were extremely concerned about my well-being, and couldn’t understand why I was fighting so hard for a pregnancy they thought was a “lost cause”. I was told numerous times that I most likely would not make it to viability. I would have never of given up the fight for her! She needed me to fight, and to be the one to stand my ground, no matter what!

At 23 weeks and 1 day, I awoke to a sudden gush, around 2:30 am. I knew something was wrong, so I called my OB first thing that morning. They immediately sent me to the hospital to be checked. As soon as the ultrasound tech looked, my worst fears were confirmed. I will never forget the look on her face. Just from looking at the ultrasound myself, I could tell there was no fluid left. She left the room almost immediately, and within minutes the doctor came in with a nurse and told me my water had indeed broken, and I could go into full-blown labor at any moment. He then read me a fact sheet about infants born this prematurely, that 3% of them actually survive, and so very many of them have very severe physical and mental handicaps.

Saying ‘I lost it’ was a complete understatement. I cried so hard that I wasn’t able to hear what anyone said from that point on. A piece of me died that day, that is for sure. I could not believe this was happening to us! At that point my doctor informed me that he had contacted the hospital in Denver (closest level III NICU), and they were willing to take me since I was so close to 24 weeks.  He stated that a helicopter was en route to take me there, so my husband left immediately to go home and pack, and make the journey to meet me there.

When I arrived, I had a ton of ultrasounds and checks, and doctors coming in and out to warn me of all the complications she could face when she arrived. That I still had the choice to terminate if I wanted, to deliver her and not request any kind of life support. I became very upset, and said, “DO NOT talk with me about this AGAIN!” I know they see women all the time, some choosing to do so, because they weren’t able to handle it, because raising a micro preemie is hard. Or I was told that we could just “try again”.  Honestly, there was never a doubt in my mind that, no matter what the outcome, we would work through it. We would give her the best shot at life, and if, God-willing, that wasn’t the way it was meant to be, we would deal with it then. I never had a doubt that Isabella belonged in my arms, and in this world with us.

I was given two doses of IV antibiotics, to ward off infection, and two steroids shots to improve Bella’s development before she came. I laid on bed rest for another 6 days before she made her arrival into this world. I was informed that if she came before I made it to 24 weeks, they would not resuscitate her. I knew I had to at least make it until then, and I told myself that I would make it…no ifs, ands, or buts. I spent that week in a lot of pain and discomfort, and with very sporadic, but very painful contractions.

After 6 long days of praying, and staying in bed as much as possible, I awoke to extreme back pain. It was the morning of April 5^th, 2011. I had made it exactly to 24 weeks. I barely slept the night before. My doctors came in to check on me around 8 am, and I informed them of my pain. It felt as though I had a tremendous amount of pressure and weight on my lower back. My previous children were by c-section, so I was unaware of what “real” labor felt like! They then stated that they would check back with me after I had taken a shower, to see if the pain was any better.

I took a long, hot shower…and I began to feel a little better. When I stepped out, I felt an extreme urge to go to the restroom. I soon realized that was not the case. Immediately I began to panic! I pulled the emergency cord next to me at least a dozen times, and began yelling like a maniac! Within 30 seconds, I had 3 nurses in the bathroom with me. I was then carried to my bed, because I could not walk. I remember looking down, and realizing I was staring at a large trail of blood under me. Within 20 seconds after that, there was no less than 30 people in my room. NICU staff, students, OB doctors…you name it, they were there. I kept telling them to call my husband, and praying out loud that this was not the end for our precious little girl! It honestly felt like the 3 minutes it took to push Bella out was an eternity. Even in my memories, it still plays back in slow motion. I kept looking around for someone to give me some kind of reassurance that everything was going to be okay. I can only imagine the terror in my eyes, and the look on my face!

Isabella was born at 8:30 am. She was 1 lb 6 oz, and was 11 ¾ inches long. She was born breech, with one leg up by her face, and one leg down. I remember seeing her after she came out, and thinking how beautiful and perfect she was. She looked like a tiny, perfect baby doll. I also remember how red her skin was. As they put her on the warmer beside my bed, and began to intubate her, I kept asking a million questions. “Is she okay?” “Is she breathing?” “Is she going to be okay?!” …on and on and on. No one said anything. It was complete silence, and utterly terrifying! They took her from me, and whisked her away to the NICU to stabilize her. We were able to go see her within two hours after she was born. I found out later that she came out with a heartbeat, but that she was not breathing on her own.

I cannot ever put into words what I was feeling in those moments. It was so surreal to me, until I saw our precious angel for the first time. They wheeled me down to see her, and against their advice I stood up to be able to see her tiny face better. I literally almost passed out. It was too much. Too much for me, and too much for my heart to bear. It was absolutely life-altering. Our lives changed in an instant, and it was so much to process. She was so tiny, and looked so fragile. She was so tiny she wasn’t able to fit into even preemie clothing, and her diaper was less than half the size of a small baby doll’s. Her skin was paper thin, and she had tubes and wires everywhere. We were told that her first week would be designated the “honeymoon week”. Essentially, it would seem as though she was doing amazing, and that the worst was over…but that it wouldn’t last, and not to expect her not to have setbacks during our journey.

We found out in that first week that Bella did not suffer any brain bleeds. Which was an absolute miracle, since we were told it was pretty common in preemies born at her gestational age. We also discovered that Bella had an ASD (Atrial Septal Defect – a hole in her heart). She was given medication to close it, but it did not work in the beginning. With all of the extra blood flow, it was complicating her breathing even more so than it already was. Within time, we did find out that Bella’s heart is no longer an issue, and she also never suffered from Retinopathy of Prematurity, which is also very common with micro preemies.

After Bella’s “honeymoon week” was over, we went through many ups and downs. I heard her first brady (Bradycardia – a disorder of the heart rate, which causes the heart to beat too slowly. It is mostly caused by a preemie holding their breath, or forgetting to breathe). It was terrifying!!! I will never forget the alarm that is set for it as well, it will forever haunt my nightmares. For her first month of life, we often had to stimulate her to bring her out of them. By her second month, she was able to bring herself out of most of them, and by her third month she had almost completely quit doing them at all!

It also took 10 long days before I was able to hold my angel for the first time. I remember thinking how small she was, she could fit into the top of my shirt with ease. I had to be very careful with all of Bella’s tubing and wires, and since she was on CPAP – to make sure it was always secure on her face. Even though it was not what I had planned for the first time I got to hold her, I was one happy Mama to be able to finally hold our miracle!!

The major issue we still battle is Bella’s severe chronic lung disease. Her lungs were extremely premature at birth. She was given surfactant, which is a medicine that helps open up the lungs. She was also given Aldactazide, which is a diuretic to help her rid her body of all the extra fluid in her lungs. She spent a long time on the ventilator.  The major complication with that, is that the longer she was on it, the more damage it caused to her lungs. She went back and forth with CPAP and the ventilator for a month and a half. She was then moved to the non-assisted CPAP. When she finally made it to the nasal cannula, she spent a long time on the humidified version. I hated it! It constantly backed up with water and went up her nose! We always had to be very careful with her tubing during that time. When she made it to a regular airflow cannula, it was one of the greatest days of my life! It was a MAJOR achievement for her. So now I hope everyone can see why I am so overprotective of Bella when it comes to illnesses, germs, and taking her out of our home. I have seen her struggle to take a single breath over and over, and I will do everything in my power to never have to witness that again!

One of the worst parts of our NICU journey was leaving the hospital without our daughter. To have gone through the process of giving birth, and then to leave and go home to an empty nursery        was devastating. To not have had that initial bonding time, or to hear her first cry (we did not get to hear her cry at all for at least 2 months)! I spent her first moments in this world wondering if she was going to make it. It was absolutely heart wrenching! During her NICU stay, I suffered numerous sleepless nights, countless days of worrying, and spent hours praying that she would be okay.

The one thing I will say, and will always continue to say, is to always be an advocate for your child! In the beginning, it was very intimidating and scary. I didn’t know what to do, or how I could help! But my motherly instincts kicked in, and I did the only thing I could do…be there for Bella, and advocate for her. I called once or twice a day, every day. I sat in on “rounds”, to hear their discussions about Bella, interject my thoughts and feelings, and to ask questions. If I felt like she was off, or something was wrong, I spoke up. I never stopped asking questions, and giving my opinions on what I thought was best for Isabella. If something was to change, no matter how trivial, I requested a call…no matter day or night. We both worked full-time, and drove 2 hours each way 4 times a week. We spent every single weekend in the NICU. If I could have, I would have moved into her pod, but unfortunately, life goes on. Our other children needed us, and bills needed to be paid. In a way, going back to work was something I needed mentally, as well as we needed financially. I could not have sat at home all day, with too much time on my hands to think. It was very difficult to manage the terrifying feelings I had, all the while trying to maintain a semi-normal life.

All of these things still hurt my heart. I don’t know if I’ll ever get to a point where it’s easier to accept them, but I do know that time will help me heal and move on. We went through a lot of ups and downs during our NICU journey. A lot of steps forward, and a lot of steps backwards. There are no words to describe how heartbreaking it is to watch your child suffer, or to be in pain, or to be so uncertain if the next day will be their last. If I had one thing to say to everyone in my life that I wish would understand, I would say that my life is not easy. I did not ask for this, and I most certainly did not ask for this for my daughter. I wish that I could take away all of the poking and prodding, the needles and medications, the oxygen, tubes and wires. On the other hand, I will never stop thanking God for the miracle that is Isabella. No matter how hard life has become, I would do it all over again, knowing that I would have her beautiful, smiling face in my life. She has made me a better, stronger person. She has helped me to appreciate the little things in life. She has restored my faith in God. She has filled my heart with forever enduring, pure love. When she smiles at me in the morning in her crib, there are absolutely no words for how that makes me feel. Almost 1 year ago, I never thought I’d be in this place. Seeing Bella smile and laugh, eat baby food and play with toys. It is mind blowing!

To this day, I still have a hard time going out and seeing a mother with her newborn. Or seeing a mother with a healthy baby or toddler. Or watching a normal delivery on television. Really anything at all to do with a normal pregnancy. Especially while our little angel was in the NICU. Our experience has literally rocked me to my core. I wish I could explain in words how deeply, and profoundly, I have been affected by our journey.

Ultimately, I have witnessed a lot of good come into our lives with the birth of our daughter. I have become a stronger wife and mother, and I absolutely have a new appreciation for life! I hope you were able to read our story, and understand a piece of us. Isabella is the light of my life, and there are not enough words in the world to describe my love for her. I truly believe she is meant to be here on this earth! She has shown me that I am stronger than I had ever imagined. She has also shown me how strong she is, how determined she is to fight, how loving and sweet she despite everything she has been through, and how life is short…we must enjoy the little things! That just because this is not the way we had planned our journey, does not mean that we have missed out.

Bella has inspired me in so many different ways. She is my hero, and my savior. There are no words to express the amount of love we have for her, and how thankful I am every day that I can look at her and know that she fought, and made it. She has completed our family in the most amazing way! She has taught me so much in the little amount of time since she has come into this world! This is our story of how Isabella came into our lives, turned our worlds upside down, and added such an amazing and pure love to our family!

To say I’ve been a little preoccupied would be the understatement of the year.  Rest assured, I still have a ton of miracle stories to bring you for the Faces of Prematurity Friday!  I hope to do a better job going forward!  There are so many stories and so many people wanting to share their stories.  Stories of hope, stories of miracles, stories of sadness, stories of great joy.  Stories like this one. 

The miracle story of Evan and Keenan 

 My husband Ryan and I started trying for a baby around the end of August, 2010. We got pregnant right away, and, by our calculations, we conceived on September 6.

 At our first ultrasound on October 22 we were astonished to see that we were having not one, but two babies! It blew our minds! We were shooting for one boy, but when we found out we were having two babies, we were on Cloud 9. We then found out on December 18 that our bundles of joy were both boys!!

All was going well until December, when I was uncontrollably bleeding. It turned out to be low-lying placenta, or placenta previa. They told me to rest, hydrate, and it would go away. After a month, it did. I was already laying low because of the higher risk of twins, and the fact that my first pregnancy was high risk.

With my first pregnancy, premature labor had me in the hospital, on strict bed rest, at 33 weeks. Aiden was delivered on May 28, 2006 at 36 weeks and he was a happy, healthy boy. Sadly, he passed away at almost 6 months old, on November 17, 2006.

Around 4 a.m. on February 9, 2011 I started feeling cramps.They weren’t full-on labor cramps, but they were painful enough to keep me awake. I called my doctor around 7 a.m. and they said to relax and hydrate. After 45 minutes, I could no longer relax. I didn’t know it at the time, but I was going into labor. I didn’t think it was labor because I was only 24 weeks along.

Ryan had already left for work, and I was home alone. I felt like I had to go to the bathroom, and I heard that was a big sign of labor. After using the restroom, the pain and urge to push were terrible. I could feel something, which I thought was a baby. I then called Ryan and asked him to meet me at the hospital. I rushed to the hospital, in labor. When I got there they tried to monitor my tummy. At that point, I could not even sit down. They took me for an ultrasound, and that was when they noticed Baby B’s heartbeat was fifteen beats-per-minute. The doctor then told us we were doing an emergency Cesarean section. Right then, my water broke and we rushed to the delivery room.

The boys came right away. Evan Connor was born at 8:29am,weighing one pound, two ounces. Keenan Michael followed at 8:36am, weighing one pound, four ounces. Immediately they were both being worked on; the doctors were stabilizing them. Once they were stabilized, they were flown to Phoenix’s St. Joseph’s Hospital, which is a hospital way more equipped for babies so premature. I was released after eight hours and Ryan and I went to Phoenix to meet our boys.

Once we saw Evan and Keenan, wires everywhere, in isolettes, the reality really hit us. From that day forth, we were confused, angry, happy, scared. We lived every emotion. It really is the NICU roller coaster.

Keenan had more issues from the beginning. He had hemorrhages in his brain, a collapsed lung, PICC line problems, and NEC. Eventually, the brain bleeds caused cerebral palsy. His NEC got so bad, after surgeries and a drain, that it was taking his life. The doctor gave us the option of waiting the NEC out, which she advised against, since it was getting worse. His quality of life would have been minimal, if any at all. He would have been deaf, mute, and blind, with cerebral palsy. And that was only if the NEC didn’t take his life first. We did some major soul-searching, made the hardest decision of our lives, and took our sweet little angel off of life support. Keenan is now free of any pain or suffering. He passed away on February 22, 2011, at 7:20 p.m. in our loving arms.

Evan had PDA ligation and double hernia surgeries. He also had ROP. They gave us the option of a laser surgery for ROP, which had results because it was the old procedure, or a new, less-invasive injection procedure. The laser surgery could have removed Evan’s peripheral vision, and it seemed to be so painful, yet the Avastin injection was still so new. We went with the injections. If they failed, there was always laser. Evan was the second child in Arizona to receive Avastin, and the doctors said it looks like nothing ever happened. After plenty of ups and downs, Evan was sent home to us on June 24, 2011. He was in the NICU for 135 days. Evan was sent home on 1/8th liter oxygen and blood pressure medication. He didn’t need the blood pressure medication for long, and he was officially removed from the oxygen on November 1, five months after coming home.

Evan does physical therapy twice a month, and is progressing wonderfully. He is such a joy. We thank God every day that we received such a blessing.

Both Ryan and I were not right with God when this all began.When we lost Keenan, His light shone on us and brought us back to Him. Everything was tested during that trying time of our lives, but we came out of it happier, stronger and more humble than ever.           

 ~Evan, Katie, and Ryan