Today marks 2 years since Braxton’s discharge from the Neonatal Intensive Care Unit (NICU). As I mentioned in a previous post, I’ve re-lived those first few days over the past few weeks and although I’ve written about bits and pieces throughout the past year, I finally decided to write everything from the beginning.
Here is Part 1 of The Early Days – All About Braxton’s NICU Stay
2 years ago, nothing could have prepared me for this journey. I clearly remember leaving our apartment at the crack of dawn, we arrived at the hospital, I got checked in, changed, did all the last minute tests and was hooked up to all the monitors. I waited what seemed like forever for the Dr. to come in and say it was time to go. We were having a scheduled C-Section because my 1st daughter was CS when she stopped responding to contractions (perfectly healthy now by the way) but my Dr. and I decided I should have a repeat CS to avoid any complications.
Nervous, anxious, and excited I walked back to the operating room. My daughter ran up for one last hug, she was terrified that a baby was being cut of me. I never explained in detail (she had just turned 6 at the time), and although I tried to reassure her, she was still scared of mommy being hurt. Reassured her one last time, and off I went.
Everything went well. At 7:58 am Braxton Joseph was born weighing 8 pounds 8 ounces and measured 21 inches long. We had a healthy baby boy and we were beyond excited.
I was wheeled over the the recovery room and waited for the nurses to finish their preliminary check on Braxton. Finally, they brought him to me to see him and try to feed him. We fell fast in love with our little boy.
But slowly, things unraveled.
I couldn’t get Braxton to breastfeed. He was coughing and sputtering everywhere. I thought I was doing it all wrong. I’ve done this before. What’s going on? The nurse came and tried to help and then she took him from me to the nursery. She said they’d bring him to me after while and told me to rest. My doctor brought Aileen in because she was really worried and wanted to make sure I was okay. After a while they wheeled me over to room where my family waited. We all anxiously awaited the nurse to bring him back. Dad and some family walked over to the nursery to try and see him.
A while passed and everyone returned, but I hadn’t seen my son. I called the nursery and asked them to bring Braxton to me. The nurse came and said she would be back to take him to feed. I was devastated. They formula fed my child despite my wishes to breastfeed and they weren’t going to let me try again. His blood sugar had dropped dangerously low and they were unable to bring it up with formula and were going to keep formula feeding him until his blood sugar stabilized. He was asleep when they brought him to me. We cuddled him, gave him lots of kisses, and took a few pictures and then the nurse returned.
I didn’t realize that was the only time I’d have with him that day.
Then, the world seemed to crash down all around me.
Hours later the neonatologist came in and finally explained everything. She began explaining that they had noticed several things “different” about Braxton. His ring and pinky fingers were webbed together, his 2nd and 3rd toes were webbed and crossed, his facial features weren’t “typical;” I was immediately dumbfounded and mad at myself for not noticing. What kind of mother doesn’t check her child’s hands and toes? I didn’t even notice! I was mad at myself. Then I was mad at the Doctor. This couldn’t be true. My pregnancy was PERFECT. I took better care of myself this time than I did the first time around. She also mentioned that Braxton had a severe heart murmur on top of not being able to maintain healthy blood sugar levels. A million thoughts ran through my mind in that instant and then the Dr. brought what little joy I had left to extreme panic and anxiety. She reported that Braxton was being transported to a NICU at another hospital and I couldn’t go with him. I sobbed. I was mortified. How could they take my child away? I hadn’t even really seen or held him. Neither had any of our family. Everyone waited around and never got to meet him. His sister, oh his sister! She was so overjoyed and she hadn’t even had the chance to see him. I sobbed uncontrollably. Joseph held me and we cried together. We had no clue what was happening, why it was happening or how it would all turn out.
At 9:00 pm, Braxton was rolled in to my room in an incubator. I couldn’t even hold him before he left. I stuck my hand through the small opening and held his little hand until the Doctor told me it was time to go. Shortly after, I demanded a nurse come in and help me remove my catheter and get me in my own nightgown from home. 14 hours post C-Section and I was walking around determined to be with my son. Joseph followed the ambulance to the other hospital and did all of the paperwork to get Braxton admitted while I sat in agony 13 miles away desperately waiting for any kind of news. I called my mom, who was already 40 miles away and just 15 miles from being home in San Antonio, and she turned around and drove right back to the hospital. I didn’t even know how to explain everything, but she sat with me until Joseph returned. When he came back I was a wreck. He told me everything the admitting Doctor told him and tried to reassure me that Braxton was okay. He told me the admitting Doctor had a far different story than the Doctor who had him transported. He didn’t hear the murmur the previous doc did and he did his best to calm Joseph down. We learned that Braxton would undergo several different tests that night and in the coming days. Blood tests, genetic tests, brain ultrasound, an EEG and an EKG. My poor baby was going to have to go through all of this without me.
All I could think about was seeing my son. I saw him all of 20 minutes his first day in this world and I will never forget that day. How I felt, what I thought, the fear, the uncertainty, the angst.
I was released from the hospital the next evening; a mere 36 hours post C-Section. It’s amazing what will and determination can get you through. We went home, unpacked my hospital stuff and picked up some other things and drove to the hospital where Braxton was.
That night we met Stacy. I don’t know her last name or if she even still works there, but I owe so much to that wonderful nurse. She sat with us most of the night answering question after question. She relayed all of the test results that were available. I learned that they thought Braxton had a seizure just before he was brought to me to be transported. The Doctor never told me this. But that’s why the EEG was ordered. I was mad at the doctor for not telling me. I knew it was because I was already highly emotional, but still I should have been told. Thankfully, the EEG was read as normal, but this is when I first learned that Braxton had unusually high muscle tone. Just before transport, because of his high tone he was very stiff and rigid and his hands were fisted and turned in, making the doctor think it was a seizure. Maybe it was, but it’s possible it wasn’t. I don’t remember how long we stayed that night, but I remember Stacy. I remember her sincerity, her honesty and her passion for this job and the little lives in her care. She helped me through the wires to hold my son, really hold him, for the first time in over a day since he came in to this world. She talked to us about the nasal gastric tube being used to feed him. She helped Joseph change Braxton’s first diaper. Something I wish I would have caught on camera, but it’s forever embedded in my heart. Joseph was so nervous and afraid of pulling off a lead or the IV. He used about 10 wipes for that first diaper change. Haha, welcome to the dad club. There were tears, there were hugs, there were kisses, and surprisingly there were laughs. Simply put, there was hope in the room that night. Hope from Stacy, hope from Braxton making slow progress, hope in our laughter, hope from the on-call Doctor that they were going to find us answers.
Those first few weeks were such a blur. We split our time between the hospital and being home with my older daughter, trying to find a way to explain it all even though we had no idea ourselves what was going on.
A FISH for Trisomy 13, 18 and 21 found no variances in those chromosomes. A full chromosomal analysis also came back normal. I thought we were in the clear, but the doctors were all convinced that something was very wrong. Every syndrome they threw at me had a life expectancy of less than a year. As the test for each syndrome came back normal, I breathed a little easier, but every time, someone was there to tell me not to get my hopes up. But, in those first few weeks, hope was all I had and I held on for dear life. As Braxton began to stabilize his blood sugars and regulate his body temperature he was transitioned to a less urgent level of the NICU. He was tested time and time again with a feeding team because he was still not able to feed properly. I pumped breastmilk fervently and brought with me everyday what he needed. He failed his feeding trials and swallow study several times. Braxton had already regulated his blood sugars, was able to maintain his body temperature on his own, and he was gaining weight. Feeding by mouth was the last piece we needed to go home. At 2 weeks old the doctors decided Braxton would need to go home with a feeding tube. We discussed the options and ultimately decided to proceed with a gastrostomy tube because it was evident that Braxton would need the tube long term. Admittedly, we thought he’d be without it in no time, but looking back, the doctor knew it wouldn’t be so quick and that’s why the g-tube was decided upon. Braxton had his G-tube placed at 2 weeks old and we spent the next week learning how to care for him and how to use the feeding tube.
I had the opportunity to room-in on his last night. The hospital had rooms set up that were basically like hotel rooms where parents could stay on the last night to have hands-on “practice” to make sure they’d be okay before getting sent home. Braxton’s crib was wheeled in and I got to hold and play with him. I was able to set up his feed with a nurse on hand just in case I had any questions. We made it through the night. Finally, we were able to go home.
After 3 long weeks we were discharged with a list of symptoms, a list of doctors and therapists to call, a load of supplies, but no definite answers. Despite everything we went through in that time, the journey had only just begun.