Sebastian turns two today! Doesn’t he look great?! He is walking, talking, running, and even knows sign language. What a miracle.
If you haven’t seen him on my blog, check out his NICU portraits!
Sebastian
22 weeks 3 days
1 pound 1 ounce
nicu
Rigdon's Story
This is a story I wanted to share for a while, but it never felt like the right time. Today is Rigdon's birthday, so what better way to kick of the blog for 2018 than sharing about this preemie and his super sweet family! You've probably already seen many of these images on an old post (Remembering Rigdon), but this time they are accompanied by his entire story from beginning to end.
Rigdon's mom was willing to write her version of Rigdon's life story, and even found writing about it therapeutic. I can't even begin to understand the emotions Liz and Alan went through over the past few years, especially now that I am expecting a son of my own. I am so happy she shared this with me months and months ago, and I am thrilled to share it with you today. If you have a preemie or have lost a child, make sure to comment with your experience, emotions, and encouragement for this family.
If you want a sneak peak into Liz and Alan's next chapter... check out Bennett's Birth. Although Rigdon can never be replaced, this family was recently blessed with another healthy baby boy!
Rigdon’s Story
"Though some days eternity can feel like forever, I know we will see and hold him again."
"Alan and I had always planned on having children. We never anticipated entering into the ‘infertility club,’ and we kept that part of our lives pretty private as we went through all sorts of procedures/testing, but that was our reality, and it was tough. I remember at one point tearfully praying that IF we were blessed with a child, I would do my best to never take them for granted, because I would know what a miracle he or she was—I had no idea how that prayer would be answered, but felt assured that child or no child, everything was going to be ok. I could never have imagined the miracles I was about to witness!
We had been trying to get pregnant for a couple of years, and had undergone three IVF attempts by the time Rigdon came into our world. He was decidedly our final attempt through IVF, and we could not believe when we got word that we were going to have a little one! In fact, I don’t think I actually let myself believe it for many many weeks.
When you go through failed fertility treatments, you learn the art of being ‘cautiously optimistic.’ I didn’t share the news until about 20 weeks into my pregnancy, when I finally felt like it was ‘really happening,’ and I allowed myself to just enjoy it. That was a little short lived. The pregnancy was full of its own drama, and I had two episodes of heavy bleeding where I thought “there is no way our baby made it through that!” Both times, I remember sitting in anticipation, paralyzed with concern, waiting for the ultrasound, and both times, weeping with joy when we heard that heartbeat and saw him wiggling around as if to say “I got this. I’m not going anywhere.” I knew from the beginning he was a strong soul. The strongest…
I had just gotten home from my shift in the ER on Jan 21, 2016, and was getting ready for bed, when my water broke. I was completely stunned. I had just started feeling better with the pregnancy symptoms, and had barely started to feel movement; I couldn’t really process what had happened and honestly, I had no idea how our world was about to change. I think I subconsciously, and rather naively, thought “we got this, things are fine, our little guy has shown us he’s strong before,” and off to the hospital we went.
The next few weeks of bedrest are kind of a blur. I had ruptured at 21 weeks and 6 days, and there were a lot of conversations about the lack of much needed amniotic fluid for his lung development in particular, as well as the risk for infection. I had a couple trips to L&D, but the contractions would calm down, and the 3 weeks we were able to keep him in were filled with hope for just one more day for him to grow. We had goals to reach! Our first goal was 24 weeks; we never got to the next one.
During that time, I started thinking back to many years ago, when I had been serving as a missionary, representing our church in the Caribbean. One day when I was struggling with feeling tired, lonely, and dejected, one of the leaders of the mission there said to me: “We can do hard things.” There was more, but that phrase has always stayed with me. And that became our motto. We were feeling tired, often lonely and often dejected, but our little family, our little boy; whatever he would face -- could do hard things.
3 weeks after my water broke, February 11th, Rigdon joined our world. He was a tiny 24 weeker, but was bigger than I thought he’d be. He weighed in at 1 pound 10 ounces and was just 12 inches long…but he looked so strong. The delivery was a bit traumatic, but I remember the seconds after I delivered him as being a moment where time stood still. The room was filled with people ready to act in our behalf, and as they held him there in front of me for a few seconds, despite the voices around me, I heard absolute silence. There was no cry. He couldn’t. I could just stare at that little boy for seconds before they whisked him away to intubate and stabilize him. I couldn’t see him, but I remember vividly the words the NICU team spoke as they surrounded him across the room. His heart rate was dropping,..they got him intubated..his heart rate improved.. The NICU doctor came to my bedside and tenderly placed his hand on mine and told me they would let me know when I could come see him and that they needed to take him then. I remember our exit from L&D without my babe in my arms. That was probably one of the first moments I truly realized the ‘loss’ we were experiencing, and would continue to experience time and again.
Our entrance to the NICU, was unlike our little tour beforehand, because now OUR little baby was in there. This was now our home. I remember seeing him in his little isolette, and wishing so badly that I could hold him; keep him safe, but also being terrified that I’d break such a tiny perfect thing if I touched him. Every experienced hand that worked with him seemed ‘too rough’ and I knew pretty quickly that this little boy now totally owned his momma. I was going to be there every minute possible to witness his life, support him, and protect him. I felt a growing weight of advocacy I had not understood before. We never wanted to leave! (Though I am sure many times the staff wished we would) We grew more and more obsessed with him everyday and if we wanted to be with him, then we had to be there in the NICU, so we were there in the NICU. We didn’t care to be anywhere else.
He is our miracle. He lived in that NICU for 7.5 months (230 days) and our sweet NICU family had become a quite literal family. They will forever be a part of us! They were there to witness every moment by our side. Every milestone was a miracle for us… The first time he opened his eyes, (His eyes were still fused shut when he was born; it was a literal miracle to watch them open in front of us), his attitude with always wanting to kick his feet out of his swaddle, the first feeding, the ridiculously long baths because I was so new and he was so tiny, when he finally weighed enough to wear clothes, moving to an open air crib, and of course, the way he loved to kangaroo. Those are such precious memories that are now shared with people who understand the significance of those miraculous moments in our lives. With as hard as it can be to have the hospital be your home, there are some joys unique to the experience, including having witnesses to every single accomplishment your baby achieves… all rejoicing with you because of how much they love him.
For every moment of pure joy, it seemed we had multiple moments of anguish. Like most parents, we held to the belief that if he could ‘just get through’ whatever had knocked him down this time, then we could get back to working towards healing and home. Every day was one more day of progress, but there were a lot of setbacks. There were nights we stayed by his isolette all night, for fear of missing our last moments with him. There was rejoicing in the morning when he had made it through the night. There was worsening eye disease until he finally required laser surgery. Then there was recovery. There was infection on top of infection and so many blood transfusions, medications, and drips… all within the first 3 or 4 months of his life. We worried that his body never seemed to have time to grow those lungs that were so very weak and underdeveloped. That became our focus of concern. He didn’t seem to be improving as expected.
Rigdon was growing, but his lungs were struggling. He had been tried on CPAP 3 times, and the final CPAP trial lasted 5 days. He was re-intubated on Easter Sunday at 6:45 pm. I remember clearly the moment he was reintubated, because I heard his tiny little lamb like cry as they removed CPAP to place the tube. I only heard his little voice for seconds, and then there was silence. I never heard that little cry again.
He couldn’t seem to get off the vent. Then came the tracheostomy. We had spent months hoping he would grow enough not to need a surgical airway. It scared us—not because we couldn’t care for it or him, but because of what it meant. We were so scared about his future, but knew that our miracle baby had fought hard to get to where he was, and we were going to keep supporting him. As long as he was fighting, we would fight right there with him. We chose faith over fear, and he got his trach and G-tube placed in June. There was about a week of recovery with paralytics, pain medicine, more drips, and, of course, infection. It unfortunately, was a setting we had become familiar with. Nothing came easy for our sweet boy, but if I could define strength, it would be him.
When he came back from surgery, I was mesmerized by his now fully visible face and spent hours staring at him in his crib. I could now see all his features without tape and tubing getting in the way. He was a perfect angel baby! I became instantly grateful for the trach because I felt I was experiencing an entirely new Rigdon! The weeks leading up to the decision were so hard; filled with heartache and a thousand questions—I had no idea I could feel like I was getting back somehow a more ‘complete’ baby, when I was so focused on what I felt was being taken away. The days and hours always felt long, but time was still passing. We watched many many babies come and go from our little part of the world. We went through cycles of sadness, anger, and hopefulness as we went through multiple ‘roommates,’ often feeling a little left behind. Our tiny little miracle boy had somewhere along the way turned hefty, which served as a reminder of our seeming lack of progress, but also, growing right along with him was the deepest, greatest love we could ever imagine. In being honest, we definitely went through moments of jealousy for others’ babies and the progress they were making, but also found great joy in learning that loving and rejoicing with others did not diminish our own situation or triumphs. And that was a big lesson to learn.
Through our extended time in the hospital, I would say my best advice is that we simply cannot compare! That’s the hardest part of having to go through this experience, I think. We want to know the end from the beginning; we want to know how it all turns out, and we find ourselves living for/in the future instead of in the miraculous moments right in front of us. It’s human nature to want to know what’s going to happen, so we try to find others that are ‘just like us’ and somehow use them as a mental guide. We try to compare our struggling child to others’ good outcomes to bring us comfort because “so-and- so went through this and they made it home—so we will, too.” It’s something even well-meaning friends do. “I knew someone that had a baby just like yours, and he/she is completely healthy and you would never know it!” Although, that may be the likely outcome and is meant to give hope, you just never know what is in store for you, and that takes its toll on the heart. Life becomes a constant struggle of balancing hope, realistic expectations, and the ever present gnawing sadness that accompanies watching your baby fight such a battle, and wishing you could do something more.
We had to learn that each and every baby is so individual; there are no comparisons. Nobody can tell you for certain what your outcome will be. You just go through it with faith and hopefulness and take things one day at a time, finding the miracles in everyday moments. We had to learn to “let Rigdon do Rigdon.” Learning not to compare helped us to be able to focus on our own little one and rejoice in His triumphs, regardless of what others were doing the next pod over. It also helped us to be able to reach out and form friendships with others because we no longer saw them as “comparables,” but as individuals with their own individual struggles, fears, and joys. Those friendships have meant so much because a natural byproduct is even more people to love our babies! Of course, there were hard days where we didn’t want to be the friendly veterans, we didn’t want to be in the NICU ‘club.’ Nobody does. We just wanted our turn to take a healthy baby home… But overall, I could never fully describe the love and sacredness of our time experienced within those walls. That was home for us.
Discharge day finally came! I cry every time I think about that day. Truly, there was no better day than the day we took him outside those hospital walls to come home. The amount of equipment required for him was daunting, but was completely overcome by our excitement and desire to watch him soar. He was as stable as possible, but not in a great place to be honest, and we really felt like if we could just get him home where he belonged, then he would begin to really thrive. We dreamt of our walks outside, getting him up from his crib in the next room, playing by our big window on the floor of our living room... we didn’t want to take a single moment for granted. We wanted him to experience being surrounded by the peace of being home, and we will cherish forever the time we did have to give him that.
Rigdon loved being home. We knew it. And We loved it even more! That’s why it was so heart wrenching to see him start to decline. He required more support and we had to experience many parents’ worst nightmare of having to resuscitate your own baby. We knew we had to go back. About 3 weeks after getting him home, we went back to the hospital, this time at LCH where his pulmonologist was, and we were there to stay.
We went to the PICU, and spent the next few months watching Rigdon continue to fight infections, and make small progresses only to be followed by large setbacks. He had been put back on the hospital ventilator and could not seem to tolerate a home vent again. We often said that we hated having to be there, but there was also no place we’d rather be. We were blessed, once again, with wonderful care-- such great love and dedication to our babe. We do not doubt for one second that he was cared for by the best throughout his life, and offered all there was to offer in his behalf. Still, it was hard being away from our NICU family, who knew him so well, and having to develop new relationships with the PICU staff. Turns out, it just added to our growing tribe… I remember it was so hard to try and explain how and why Rigdon had changed and was worrying us. They didn’t know him yet, but that didn’t take long to remedy. He stole their hearts pretty quickly and he had a brand new audience to swoon over his every smile, hand hold, and expression. We saw him laugh for the first time there! It actually scared us at first because the alarm on the vent would go off from the increased pressure, but when we realized he was laughing, I mean, you can’t describe the swelling that happens in your heart! He even had his first and only taste of baby food there (pears). We felt our little room at LCH had become a special place, made special by his sweet spirit, and people loved to come and spend time there with him. (That made it just a little easier, knowing he was being well loved for the times when I couldn’t be there.)
The holidays approached and we knew he was nowhere close to where he needed to be to return home. As had been the case many times before, we were told he was not progressing as expected. We weren’t sure why he wasn’t improving, but kept holding on to the hope that he could overcome his BPD with more time. That timeframe kept getting longer and harder for him. Christmas week was actually a really good week for him, and I think that was a blessing meant just for me. We had a beautiful family Christmas and even took our first family photo to include our surprise miracle baby #2! After being told this would likely never be a possibility for us, we just knew this was another miracle in our lives, and a purposeful blessing given to us for a reason.
Two days after Christmas, Rigdon started to really struggle, and by New Year’s Eve, he was in really bad shape. He had never been like this before. Things were different this time. He was placed on paralytics, the oscillator, multiple sedation and pain meds, and for the next couple of weeks, we watched for him to show us he could get through this once again. The months had been difficult, but he always seemed to have just enough strength to get through. He’d never quit fighting, but this time seemed to be too much for his body. We had been living in his room with him during those final weeks, and when he passed, we held him as tightly as we could physically hold him, as we watched our beautiful miracle baby boy slip away. We found out we were having another baby boy just days before Rigdon passed away.
There is no replacement for our perfect angel boy, and there is a constant throbbing and loneliness for him that I am having to learn to live with now in my heart, but I can say with certainty that his life was full of purpose and we wouldn’t trade a minute of our time with him. He has forever changed us (I hope for the better), and our family, and pretty much everyone that ever knew him. We didn’t get the outcome we hoped for, but the influence of his life continues to unfold in front of us daily. I can say we never took him for granted, as I prayed so long ago, and am so grateful for every long day and night with him… every memory still feels so raw, so fresh in my mind. There is no “moving on” when it comes to missing your baby. Only moving forward. And sometimes, like Rigdon, I feel I am doing that on a sliding backwards slope. BUT – there is meaningful purpose in his life and that helps as we find the joy of having learned to love so deeply and the blessing he is and forever will be to us. I hope to be able to help other moms feel some sense of comfort knowing that I know, with faith and through experience, that we really can do hard things, whatever the outcome, and it will be ok."
Charlie, An Angel | 26 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
You may remember Charlie from a few photos floating around on my Instagram page. When we first met in the NICU last October, Charlie was just over 2 weeks old. He came into this world weighing right at 1 pound. You read that right. Charlie weighed 1 pound 0.02 ounces to be exact.
Although Charlie's life was short, he fought hard to be with his mom and dad. Here is Charlie's life in a nutshell, as told by his mom.
It all started on May 15, 2016. I wasn’t feeling so great and I knew I was late, so I decided to take a pregnancy test. Well it came back positive, and I decided to take 5 more tests just to make sure (I was very surprised). On June 6th we ventured to the doctor to hear Charlie’s heartbeat for the first time. My regular OB/GYN did some blood work and tested for Down’s syndrome but it came back fine. My numbers came back somewhat high for Spina Bifida, so I was referred to a Maternal Fetal Physician.
On August 2nd, Dr. Shaver confirmed we were having a little boy (quite the surprise for me). Charlie was quite active in the tummy and they found that he did not have Spina Bifida. However, the doctor did talk to us about the possibility of preeclampsia. I didn’t think that kind of thing would happen to me.
On September 16th (my birthday) I had a severe headache and could not function very well. By September 19th, I was being admitted to “Special Care” at Presbyterian Main to be monitored for preeclampsia. I was followed closely and Charlie’s heart rate would drop from time to time, which was a cause for concern. On October 3rd I had an ultrasound. Charlie’s heart rate dropped significantly while they were conducting the ultrasound, and that lead to me being sent to L&D for 24 hour monitoring. At 3:45am, I had to use the bathroom and when I returned, the nurse was unable to get Charlie’s heartbeat, even with the assistance of other nurses and a doctor.
At 5:30am my Maternal Fetal Physician made the decision for Charlie to be delivered by C-section because he would not have made it through the next 24 hours if they waited. It was at 6:33am when my story ends and Charlie’s begins...
Charlie was born weighing 1 pound 0.02 ounces and measured in at 10.25 inches long. The doctors prepared me telling me that since Charlie was born so early, he probably would not make any noises when he was born. I prayed and asked for a sign that he was ok. When Dr. White held him up for me to see, he screamed and cried. I cried at that moment because it was the most beautiful sound I had ever heard. I didn’t realize it would be the first and only time I would ever hear him cry.
Upon Charlie’s arrival, Chris met with Dr. Morales and Kayla (nurse) and they talked to him about Charlie. Kayla told Chris that he had nothing to worry about because she would be taking care of him that day. They wheeled me into the NICU from recovery and I was able to touch Charlie for the first time. I could not get over how little he was and that his eyes were still fused shut.
In the following days, we had a lot of ups and downs. The first big hurdle was on October 9th when Charlie was at 100% oxygen. I remember the neonatologist telling us that we didn’t have a lot of options at that point because his lungs were in such bad shape and he needed so much support. Chris and I just looked at each other and cried because we knew he was very premature. Everyone tells you about the roller coaster ride called the NICU.
It was on October 9th that we decided to have Charlie baptized. We wanted to be prepared if anything should happen. We celebrated each milestone as it came... whether it was weight gain, being able to tolerate feeds, skin to skin contact, or something as silly as my first experience with breastmilk poop.
It was not a surprise that Charlie had stolen Kayla’s heart when she first met him, so it was important to Chris and I to ask Kayla about being Charlie’s first primary nurse. As time went on we had Anna, Carmine, Rachel and Hannah all sign up to be primary nurses for him. We did have a few other nurses that had special relationships with us and Charlie but they already had primaries. These women all left a lasting impression on us. We will always see them as “Charlie’s angels.”
Charlie was a feisty little guy. I couldn’t help but laugh when the nurses would tuck him in and swaddle him and he would somehow break free, whether it was his little legs kicking or it was his arms. Out of nowhere, you would see his arm go up in the air like a defiant victory.
It might sound silly but I enjoyed changing his diapers, taking his temperature, wiping his face and just having those few minutes touching him and talking to him, so that he knew I was there. In the morning when I would arrive, I would sing songs to Charlie and talk to him about the great big world. At night time I would go back and read him a bedtime story. His favorite story was “On the night you were born.” I say this was his favorite because it seemed to be the one story that I read to him when he would open his eyes and look around.
My most treasured memories were either when Charlie would grab my finger and hold it, or when we had our skin to skin time and I could just sit there and snuggle with him.
I received a call from the Pediatric Surgeon on 11/26/16 and he informed me that they needed to do exploratory surgery bc they thought Charlie might have Necrotizing Enterocolitis. I would not give verbal consent. I wanted to see Charlie before they did the surgery and I made it to the hospital in time. I got to hold him with the assistance of a Respiratory Therapist until they got his bed set up. They told us he had a 50/50 shot of making it through the surgery, and I remember thinking and feeling like this was all of my fault becasuse of the preeclampsia. I felt like my body failed Charlie and put him through more pain than I went through.
Charlie made it through the surgery and did great. We stayed overnight at the hospital just to be on the safe side. I woke up at 1:45am because I wanted to be at his bedside for his 2am assessment. I received a text at 1:50am from Charlie’s nurse telling me that we needed to get to his bedside. I woke Chris and we went running. As we turned the corner we were not prepared for what we were about to see.
A nurse was giving Charlie chest compressions. His primary nurse had just given him a dose of epinephrine because his heart rate dropped and it was not coming back up. Once they were able to get him stabilized, Chris and I made phone calls and some of our family members came to the hospital. Charlie’s nurses all showed up. Charlie really knew how to draw a crowd and get the emotions going.
Around 9pm Monday night, we started to realize that things were not going as well as they were earlier in the day. Charlie was on 3 different blood pressure medications to bring it up, but nothing seemed to be helping. He just looked so tired. It was at that time that I looked at Chris and I told him that Charlie is getting tired and that we needed to make a decision. He looked at me and shook his head yes. Dr. Morales was getting ready to approach us and tell us about the terrible blood gas that he just had, but I stopped her and said that we knew he was tired. We wanted them to go ahead and unhook Charlie from everything and place him in my arms, and that is how he would leave this world.
Our families and nurses were there and said their goodbyes. We then asked our families to leave and we only wanted Charlie’s nurses, our Deacon and Dr. Morales there. The nurses dressed Charlie and laid him in my arms and Chris sat next to me. I sang to him and told him that we would never be angry for him not wanting to fight anymore. After about 5 minutes, Dr. Morales came over and listened to his heart and looked at us and said that he was no longer with us as of 1:24am.
Dr. Morales and Kayla were there when Charlie came into this world and they were there when he left and that meant so much to us because we had such a wonderful relationship with them. When they removed the ventilator tube, I felt so heartbroken but when I looked at my sweet boy, he had this beautiful smile on his face. It was like he was happy and at peace and I felt like maybe my dad was there to greet him in Heaven.
“Dearest Charlie,
You came into this world on October 4th and changed our lives forever. It seems like only yesterday that we had heard the most beautiful sound upon our ears when you cried. It gave us the greatest comfort knowing that you would be our little fighter, our superhero. We had no idea at that moment that we would gain not only a beautiful little boy in our lives but also a family we didn’t know we would be blessed with. Eight weeks may not seem like a long enough period of time to change people’s lives but you certainly did sweet boy.
Your personality was enormous for such a little peanut. It was not unusual for you to go from swatting your little hands at your nurses and sometimes even mommy to grabbing the finger of those giving you the loving care you received. It was comical to watch your nurses work so hard to bundle you up, only for you to sneak your little arm or leg out and shake them in defiant victory. As if your personality wasn’t enough you were blessed with golden blonde hair and big blue eyes and it is plain to see how you captivated the hearts of all who met you. Speaking of those captivated hearts, as you know they are here with us celebrating you. You may not recognize them without their scrubs on, but we know you recognize them by their love and devotion to taking care of you. Whether it was comforting us when you were having a rough day or celebrating milestones with us, their resolve never wavered.
We could fill volumes of books with the hopes and dreams we had for you. In spite of all of those things we wanted our perfect little boy to be a good person. You exceeded our hopes and dreams in these 8 weeks we were blessed with. You taught us more about unconditional love and compassion than we could have imagined. You made a difference in a way that most people can only dream.
We love you very much, sweet boy, and miss you terribly. There is not a minute we don’t miss you. We can only take comfort in your being set free from the pain and struggle you fought so hard through. You overcame many obstacles in your time on this earth, with great perseverance. There isn’t anything we wouldn’t give to see your beautiful blue eyes looking at us, or feel you squeezing our fingers and not letting us pull away from you.
Watch over all of those gathered here and those who were blessed with your presence. We all have an extra guardian angel now to watch over us. You are loved and missed so much Charlie, and you always will be.
Love always,
Mom and dad”
You Are Not Alone
I want other moms to know that they are not alone and that this is a unique club that no one ever wants to be in. I never in a million years thought that I would be cremating my 7 week old son. I still to this day struggle with the feeling of my body failing Charlie and causing him more harm and pain on the outside. There are triggers everywhere and somedays I can walk around the mall or a store and be ok and other days I can walk in and walk right back out because of my anxieties and triggers. I have a few friends who have suffered miscarriages which is still the loss of a child but they cannot fully relate to what I struggle with because we had Charlie for 7 weeks and had a different experience.
Chris and I started attending Kindermourn for grief counseling which has been great. I started going to a support group last week called “Empty Arms,” which specializes in miscarriages, stillborns and infant loss. The first meeting was definitely eye opening for me. I didn’t expect to be in a group with 4 other couples and myself (Chris does not want to participate in the group) discussing the loss of our children and talking about the trauma that we suffered.
One thing that I have learned is that men and women definitely grieve differently. That is something to be prepared for. Do not let people tell you that whatever you need to do to help you grieve is wrong. There is no handbook on grieving or how to cope with the loss of a child and everyone grieves in different ways. One other thing I wanted to mention is that it is ok to need medicine to help with depression or anxiety. It does not have to be a permanent thing but it can help especially when you are going through so many emotions and it can be very hard to handle.
Update on Jack | 23 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
Jack's mom sent me an update on his progress! If you missed him on the blog, click below to see what he looked like shortly after he was born at 23 weeks. Then read below to see what his mom had to say about his progress.
“Jack is doing well! He has been up and down on his feedings. He gets very close to full feedings and then his gut needs a break so we start back very low. He does show cues of hunger and rooting and LOVES taking a bottle. He is 2200 grams now! We are working towards him being in a crib, but don’t want to overload him with a ton of work to do on his own. He is down to low flow cannula on .0125 Os. He is not quiet ready to be off oxygen, although he pulls the cannula out constantly so we resort to taping it to his nose.”
Jack | 23 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
“Jack was expected to be born in April 2017, he had other ideas. We were working and living on job assignment in Indiana and drove to Charlotte for a few days to spend time with family for the holidays. The night after we got here, Jack arrived as well. From the point of water breaking, it took 12 minutes until Mini Man graced us with his presence. It has been such a huge roller coaster since we got here. A lot of one step forwards and two steps back.”
These photos were taken a while back, but Jack is definitely making progress. Click here to see how Jack is doing!
Asher | 25 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 25 weekers, baby, boy, nicu, preemies
“We chose the name Asher because of it’s beautiful meaning: happy, blessed, and fortunate...which is exactly how we feel today!”
Asher was born at 25 weeks and 6 days at just 2 pound 6.9 ounces. When we met, he was over 2 months old, and looking oh so healthy! He was working on learning how to take bottles and was able to go home to be with his parents and big brother, Jackson, in February right after his due date.
Kerri and Nate's story wasn't easy though. Jackson was conceived by IVF (in vitro fertilization) after a few years of infertility treatments and several rounds of IVF. Asher was conceived using a frozen embryo - Isn't that amazing!? Our medical advances are absolutely astonishing sometimes!
All went well during Asher's time inside the womb, until Kerri was diagnosed with preeclampsia. It eventually progressed and became so severe that Asher had to be delivered via emergency c-section. He was born on November 4th and experienced a few hiccups along the way that complicated his stay in the NICU. Today is he is looking stronger and stronger!
Avayah | 29 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
“She is a rainbow baby, as we had our first pregnancy end in miscarriage in May of 2016. ”
It was a pleasure meeting Avayah and her sweet family in the NICU. She is currently in the neonatal intensive care unit and is working towards going home soon. When I met Avayah, she was having a great day. She handled her outfit changes very well, and was even able to come out of her bed to enjoy skin-to-skin time with her mom and dad. I can tell she is going to do big things one day!
Here is Avayah's birth story, as told by her mom:
"We found out we were expecting the end of July 2016! At 29 weeks gestation, I suddenly developed HELLP syndrome. My platelets became dangerously low at 16,000 and they had to perform an emergency c-section. She was therefore born on Saturday, 1/21/17 at 9:40 am. She was 2 pounds and 11 ounces of strength! She is has increased her weight daily, and she is up to full feedings via her OG tube. She's such a great baby and is very chill. She loves skin to skin time and reading her stories. We are so blessed she continues to do so well and cannot wait to take her home."
Update on Sully | 28 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 28 weekers, boy, 28 weeks, preemies, nicu
Sully is growing up! I can't believe this previous 28 weeker that I photographed last June is now 16 pounds! He was just 2 pounds 6 ounces at birth, and here he is now! He might just be my most handsome NICU baby! If you missed his NICU portrait session, check it out here or click the button below.
“Sully is doing great. He is weighing in around 16lbs now. He is eating three meals a day, rolling over, sitting up, and trying his best to walk.”
I got to see Sully this fall at an event Novant Health Hemby Children's Hospital where I was able to photograph him once again. Pierce's Project hosted a Germ Free Santa Session for past NICU babies, and sweet little Sully showed up! Can you even handle how cute he is in his little elf outfit? His parents are going to have their work cut out for them when the girls start chasing him!
Update on Lincoln | 28 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 28 weekers, 28 weeks, boy, nicu, preemies
Lincoln was the first NICU portrait session that I did almost a year ago! I was so excited to share my gift of photography with a NICU family, and even more thrilled with the experience when I met his parents. They are the sweetest couple and they were so appreciative of my complimentary services. I love being able to incorporate my artistic craft with my love for the preemies and nursing career.
Here's an update from Lincoln's mom:
"Lincoln is 10 months (7 months adjusted) already. He's over 15 pounds. He's crawling around everywhere, sitting up on his own, and just recently pulling himself up to stand! It's so amazing to see him grow & develop. (He still receives PT once a week and speech once every other week.) He is just full of personality and I'm so grateful to be his mommy. ❤"
Update on Rhett | 28 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 28 weekers, 28 weeks, boy, nicu, preemies
Rhett was born in July of 2016 at 28 weeks. He weighed 1 pound 9 ounces. I was lucky enough to photograph him during his stay in the NICU by offering his parents complimentary NICU portraits. Pierce's Project arranged for Rhett's mom to have her hair and makeup done for the session, and she looked stunning! (See Rhett's NICU session here.) . While I do follow many NICU patients on social media and could see that he is doing great, I caught up with Rhett's mom to request a personal update on Rhett's progress since going home.
“Rhett is doing so well! He is up to 12 pounds, rolls over, and is a total mama’s boy. He is a great eater and sleeper, and he loves being home with his parents and two dogs. He is thriving! He is so much fun and so happy! ”
Remembering Rigdon | 24 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
It was in May of 2016 that I received an email from Liz. She requested NICU portraits of her micro-preemie, Rigdon. He was already 12 weeks old, and Liz was feeling mom guilt for not contacting me sooner. She received my information in a Pierce's Project welcome bag she received when Rigdon was first admitted to the neonatal intensive care unit at just 24 weeks and 6 days. She never felt like it was the right time to have me come take his photos, but now she was upset that she missed so many opportunities to catch him at his tiniest. Would I still come and photograph her baby? Of course I would. We set up an appointment and I sent some additional information to Liz. And then, crickets.
I didn't hear from Liz. I was concerned, but knowing the roller coaster that is the NICU, I didn't want to pry. I gave her space and reached out to her the night before our scheduled appointment. Liz responded and told me that Rigdon had a rough week. He had to have eye surgery and was having a rough recovery. He was also scheduled to have a tracheostomy and feeding tube placed the next week, so it was just not a good time.
Four months later, I met Liz in the NICU while I was photographing the Queen City Quints. I immediately recognized her name and was surprised to see her still in the NICU. I got an email the next day asking if I could come and photograph sweet Rigdon.
I chose to photograph Rigdon on his discharge day, which I thought was the perfect day for NICU portraits. I knew there would be a lot of people in and out, but I underestimated just how many. Rigdon was one loved boy! I've posted his discharge day photos below.
Today, Rigdon would have been 1 year old. I wish I could tell you that his journey after being discharged was an easy one, but he spent much of his time in the pediatric intensive care unit. Liz and Alan are spending today celebrating Rigdon's life and remembering the special times they had with him while he was here. They're even spending today visiting the hospitals where Rigdon spent most of his life, bringing gifts to those who cared for him. Their generosity during this devastating time is certainly inspiring!
Just a few days before Rigdon passed away, Liz and Alan received the news that they are expecting another baby boy. I was elated when I heard the news, but also knew that they must be feeling such mixed emotions, celebrating new life while grieving the loss of another. Just in the short time I've known Liz, I've seen her strength and I know that she is more than capable to face the challenge. I think this new baby is God's way of helping Liz and Alan prepare for their next stage in life. Liz's motto throughout Rigdon's journey was "We can do hard things." While I don't know where that comes from, I certainly hope this is the hardest thing they have to endure.
Enjoy Rigdon's sweet cheeks as you look at his discharge day photos! He's one precious little nicu graduate! Click here to donate to Rigdon's family.
“Tragically, my wife Marie, passed away one week after giving birth. The name Hope suddenly took on an entire new meaning for me and my entire family. ”
Landry Hope | 29 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 29 weekers, girl, preemies, nicu, 29 weeks
I met this sweet little lady for NICU portraits when she was a little over one month old. I happened to run into one of her family members a few weeks prior, a girl who I just happened to know from my childhood. When I saw her in the NICU, I was very confused as to why she was there. Did she have a baby in the NICU? I knew she had some health issues, but did I completely miss the fact that she was pregnant? Well, I was relieved to find out that I had not been living under a rock after all. This was not her baby. She was just visiting. Then she told me Landry's story. I just knew I had to photograph this precious baby as soon as possible.
Here is Landry's story, as told by her dad.
"Landry Hope was born on November 15, 2016. Her gestational age was exactly 29 weeks. She weighed 2 pounds 11 ounces, and measured 15 inches in length. When the nurse asked us if we had settled on a name, we told her we had not. We knew we liked Landry for a girl because it is my mother-in-law's maiden name, but we had not settled on a middle name. We didn't even know if we were having a boy or a girl. So, we agreed on Landry and my wife, Marie, turned to me and said "what about Hope" for a middle name. She nailed it. We were full of hope that Landry would grow and things would be ok.
Tragically, my wife Marie, passed away one week after giving birth. The name Hope suddenly took on an entire new meaning for me and my entire family. We are incredibly grateful for the care that Landry received during her NICU stay. We were told that Landry would probably be in the NICU until somewhere around her due date of January 31st. Because of the incredible care she received in the NICU, she was able to come home on the 4th of January. She now weighs more than 7 pounds and is doing well."
{Request your own free NICU portraits HERE.}
Update on Sebastian | 22 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 22 weekers, 22 weeks, boy, nicu, preemies
Remember Sebastian? He was born at just 22 weeks and 4 days and spent a significant amount of time in the NICU. I photographed him when he was exactly one month old and 26 weeks 4 days, corrected. He recently got discharged from the hospital and is now home hanging out with his mom. I asked Sebastian's mom for an update and here is what she had to say:
“If I could just match his sleep pattern along with these doctor appointments, I would be perfect. I’m so happy he’s home. I watch him like a hawk and every time he grunts I take an extra peek.
I know that Sebastian is blessed to be a 22 weeker and only be sent home on vitamins, and that’s pretty much unheard. I want other moms to be hopefully that they’ll be just as fortunate. ”
“Though the road is bumpy, I hold on firmly - Especially when kangarooing.”
Sebastian | 22 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 22 weekers, 22 weeks, preemies, nicu, boy
I had the pleasure of meeting Sebastian when he was exactly one month old, He only spent 22 weeks and 4 days in his mom's womb before he decided to come out and see what's outside of her belly. He actually decided to start making his way out as early as 18 weeks. At his ultrasound, his mom was happy to find out that he was a boy. Moments later, she was told that she was already dilated 1 centimeter. She knew she was in for a difficult time!
On September 26, a "small, sweet, and perfect" boy was born. Sebastian is loved by so many, including his grandmother seen in the photos below. His mom wanted him to have these photos to be reminded of how strong he is. She says, "I want to show him these pictures to remind him that he can accomplish anything. He is my saving grace and my reason to continue fighting my own issues."
I'm excited to say that Sebastian (a 22 week preemie!) has been discharged home from the hospital! He went home last week and is oh so handsome! I'm excited to see how this preemie proves just how strong he is. He has come such a long way, and I know his mother is so proud to have him as her own. Big things are ahead for Sebastian!
Update on 27 Week Twin Preemies, Ada and James | NICU Portrait Session | Charlotte, North Carolina
in 27 weekers, 27 weeks
Remember my sweet twin friends, James and Ada? Well, Ada finally made it out of the NICU to be home with her brother! These photos were from our last session together, when she was 3 and a half months old. She just had to show off her Christmas outfit! She is such a sweet babe!
27 Week Preemie Twin Ada Smiling in Christmas Outfit
Here is an update from Ada's mom:
"Ada came home on January 2 (after 110 days in the NICU) weighing 5 pounds 13 oz. She now weighs 6 pounds 8 oz. She came home on a small amount of oxygen. She is becoming a better eater, taking bottles more quickly and efficiently. She is enjoying lots of naps since being home in a calmer environment. She loves being snuggled and talked to and will stare at your face the entire time you are speaking. She can lift her head a little and turn it when you hold her on your chest. She also loves to grasp your finger or objects placed in her hand. She sleeps fairly well through the night between feedings but is an early bird who loves to wake up around 6 am.
James came home November 23 (after 70 days in the NICU) weighing 5 pounds 12 oz. He now weighs 11 pounds 1 oz! He is changing so much every day. He is starting to look at you when you speak to him. He smiles socially, and he can lift his head and turn it during tummy time. He is starting to make "baby sounds" such as cooing when he is talked to. He is fascinated by high contrasts in color which means that our dark colored ceiling fan mesmerizes him. He sleeps extremely well from one feeding to the next during the night."
I am so excited to watch both of these preemies grow strong and develop personalities. These parents are so sweet and I have truly enjoyed getting to know them!
27 Week Preemie | Charlotte, NC Newborn Photographer | Krista Gantt Photography
in 27 weekers, 27 weeks, boy, nicu
Ty
Born at 27 weeks 4 days, weighing 1 pound 8 ounces
“After approximately 5 years of trying with a couple losses, we eventually got pregnant with the assistance of IUI. On Mother’s Day of 2016, I found out I was pregnant.
After further appointments with REACH, it was determined that I was carrying twins. During the pregnancy around week 9, I lost one of the twins. I continued to have complications during the pregnancy with a subchorionic hematoma and hyperemesis. Following these issues, I was hospitalized at Presby Matthews for a week due to signs of preeclampsia and my placenta was not allowing proper blood flow to the baby. Following a week of observation I was released.
I spent a week back at home and was re-admitted to Presby Main a week later, at 27 weeks and 1 day. I received steroids during this time, my blood pressure continued to rise along with my liver values. The decision was made to deliver Ty by an emergency C-section on 10/22/16 at 0401 hrs.
During my stays at both Presby facilities, I can't say enough about the nurses and doctors. Everyone has been fabulous. Since Ty was born, it has been difficult traveling to and from the NICU but it is so worth it. The NICU Nurses and Doctors have been amazing and always keep us updated on Ty's progress.
It is stressful and there are "ups and downs" but you have to focus on the positives and keep cheering your baby on.”
“They are both so small, but they are such strong little fighters.”
27 Week Twins | Preemies | NICU Portrait Session | Charlotte, North Carolina
in 27 weeks, 27 weekers
Let me introduce you to James and Ada! They are my most recent twin friends : ) I'll be following them throughout their journey, but let me share their story with you...
Virginia found out she was pregnant with twins when she was only 7 weeks. She and her husband were thrilled, but at 16 weeks discovered that their baby girl was not growing as well as doctors would like. Doctors weren't even sure that Ada would make it any further into the pregnancy.
At 20 weeks, Virginia was admitted to the hospital with preeclampsia. She stayed for 2 weeks and then was later released with the understanding that she would be on modified bed rest to allow Ada and James more time to grow.
At 24 weeks, Virginia was admitted again for elevated liver enzymes and also found out that there was limited blood flow through the umbilical cord to Ada. After discussing several options, Virginia and her husband decided to do what was best for her babies...She would receive two rounds of steroids and then deliver the twins.
At 27 weeks gestation, the twins were born. James weighed less than two pounds and Ada weighed less than one pound. It was a whirlwind for Virginia but she is so thankful that they are safe and growing now. James is breathing on his own with bubble CPAP and Ada is still needing support breathing so she is intubated on a ventilator. Although these babies have a long way to go, I'm excited to follow them and see their progress! Take a look at these little guys below!
“Complete terror and panic set in as we rushed to the hospital. We cried and prayed that everything would be alright.”
Rhett | 28 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 28 weekers, nicu, preemies
Courtney and her husband tried for some time to have a baby. When they found out they were pregnant, they "were over the moon excited!" Courtney felt great throughout the pregnancy. She eventually started having issues with elevated blood pressure, that evolved into severe preeclampsia. On Sunday, July 17th, Courtney experienced a placental abruption and sweet little Rhett was delivered by c-section on July 20th. He weighed just 1 pound 6 ounces.
Here is the rest of Rhett's story, as told by his mom:
"We were so relieved to hear him cry when he was born. The whole experience was so surreal. The doctors and nurses took Rhett into the NICU right after delivery before I could even see him. Once he was stable and I was out of recovery, my husband and I went to the NICU where I finally got to see my newborn.
He was perfect and beautiful, but so tiny. I was terrified. The beeps of the machines, all the wires and lights... It was so scary.
He has been making steady progress and is already 8 weeks old. He is breathing mostly on his own and weights 3 and a half pounds already. He's growing stronger everyday!
If I could go back in time, I'd tell myself its all going to be ok, he will grow fast and even though it doesn't seem like it, this wont last forever."
“He is fiesty is what all the nurses say. He has the nickname Action Jaxson!”
Jaxson | 25 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in nicu, preemies, 25 weekers
You might have seen Jaxson floating around on my Facebook page. Well he has given his mom run for her money! Jaxson was born on July 7th at just 25 weeks, weighting 1 pound 4 ounces. He was originally due on October 17th, but his mom was diagnosed with severe preeclampsia and Jaxson had to be delivered via c-section.
When I came to visit him, he was spending some time on bubble CPAP but he is now back on the ventilator letting his body rest while his lungs grow a little. He made it to 3 pounds 6 ounces and is now 33 weeks and 3 days. (Yes, we count days in the NICU!) According to the nurses, Jaxson is getting quite spunky in his old age. :) Take a look!
Kaden | 27 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography
in 27 weekers, 27 weeks, preemies, nicu
This sweet little guy decided to come a little early! Meet my new friend, Kaden! He was due in August but decided to come in May at just 27 weeks. His birth weight was 1 pound and 11 ounces, and he was only 11 inches long! Kaden's mom found out that she was expecting in January and did not expect to go into labor so early. She was so scared, just like most other NICU moms. Can you relate? What kind of feelings did you have when you found out that your baby was going to be delivered sooner than expected?
This is what WebMD says most babies are doing at 27 weeks. Kaden decided he didn't want to have anything to do with all of those "normal baby" things - he was so excited to see his mommy that he just couldn't wait any longer!
Scroll through to see what his life is like in the NICU...
