Thank you God, Baby Boy Turns ONE
This is HUGE. For so many reasons. But mainly because he made it. I was hand in hand on the doorway of death with my son and I NEVER want to be there again.
I knew then it wasn’t an option, nor the way his life story would go, but little did I know the courage, living in the total present and partnership with spirit for the emotional willpower & fearlessness it would take.
My life in an instant completely changed and so did my mind. It was forever changed for the better despite the heroic courage needed and the ultimate trust in the Devine. If I’m honest, I knew something like this was coming, I knew my son was a very special soul from the start and from conception had been forcing me to turn to faith, introspection and become fearless.
Little did I know I would be taking a forced and immediate break from my life & truly the world in 2019 with his birth. As horrific as the story it goes, I promise it has an immensely joyous and happy ending.
Let me say one more thing absence of fear is not courage.That’s denial. Courage is being in a highly fearful state and being able to get through it, push through it and work with it.
6 Days old at home in total post-labor bliss, it became clear that something wasn’t right with his umbilical cord and the surrounding area. It was inflamed and angry red around the umbilical stub. The stub itself was extremely dark and shriveled and from my first birth looked way to dehydrated and ready to fall off way to early. We talked to our care team and decided to wait till morning and watch it. In the am, day 7 (imagine how small your 7 day old is) it was clear and my mom gut was going off that this needed to be looked at by our pediatrician immediately. We got on the phone with the nurse line and they wanted to send an ambulance, but our son didn’t have a fever, was eating and going to bathroom fine. His disposition (which is extremely hard to know at 7 days old) seemed unchanged and still his “normal” for that tender young age. My husband opted for us going to have the first available pediatrician appointment at noon, based on that my son didn’t have other symptoms of urgency. Also we were just at the pediatricians day 5 and he checked out amazingly. When born he was incredible alert, aware and present- so strong. Still it wasn’t okay, I knew something was wrong and urgently wrong- I felt it. It was around 7am. I couldn’t settle. Mom’s you know what I mean by this if you have been there. My mom gut wouldn’t quiet and the fact that the nurse wanted to send an ambulance based on the description we gave was drilling on my mind & mommy heart.
With that, I said I can’t handle this nor handle waiting to noon. I threw on the biggest sweat pants I owned, maternity underwear a huge pad and just a sweater over my nursing top. I knew our doctor would understand us barging in and if a mer infection that called for antibiotics, well then- so be it. We would happily return at noon for our scheduled appointment. If not, then I made the right call.
The right call it was. We didn’t even make it into the private patient room when she took one look and said, I’m calling it in. Please head to the emergency room down the road. THE WORST THING A PARENT CAN EVER HEAR! or I thought. At that moment it was like my whole heart feel out of me and the weight of all the horrific things of this human world feel on top of me to smother me. The next moments were a blur. I held my son in the back of the mini van as my husband drove us. I managed to update my midwife (more of my soul friend & mentor) about what was going on and next thing I know she was walking in with me to the emergency room as they were waiting to receive us and I carried in a perfectly content beautiful baby boy.
It was pure controlled chaos of strategic movements all around, all my baby boy wanted to do was nurse and be held. They immediately started him on antibiotics, at this moment in time, it became a bad dream. Surreal. Not real, how could it be. Me? Us? No FUCKING way. This is not happening to my perfect baby. He is perfect and so healthy, this is all a mistake. There is no way I’m here right now. I want to just go back to my master room cave and cuddle with my newborn, uninterrupted. This is an extreme interruption in my mom plans for us and for how his first week should be turning out.
My midwife was again my coach, but not in a way I ever wanted to experience working with her. This was what we always wanted to avoid, in a Hospital and now an emergency room- this isn’t the PLAN. But she in her loving, strong and trusting way guided me through this. What is this? The hospital, the emergency room, the doctors, the nurses, the plan- wait what plan?
Next thing I knew the CHET (Children’s hospital emergency team) arrived to transport my angel to Rady Children’s Hospital about 30 minutes away. Wait, what?! This was now getting out of control and out of hand, this is beyond urgent and serious- what is happening to my baby? As they bring in all the transport equipment and the little incubator on wheels that is terrifying to look at. Again surreal in the worst/ scariest way imaginable. They start to prep him to be transported and tell me that I will not be able to ride with him. Okay this is when the second weight of the world, rip my heart out of my chest and step on it, hit me. They expected me to let them take my 7 day old infant out of my arms and in a vehicle without me. No way in hell. Yes way- it’s the rules. I honestly, at this time thought this was real torture and the pain in that moment was unbelievably hard to even manage. The drive in my midwifes car to Rady’s following my son in ambulance not know what was going on with him was gut wrenching, truly traumatic. It took all my inner courage and fearlessness to step up and become present. I prayed. I don’t pray, I really never have prayed except as a child when I would with my Grandmother, but I prayed. I prayed hard, determined and not asking- demanding attention. Everyones attention and energy at that moment on my son.
I arrived into the ER at Rady’s with a look of pure devastation, horrified and beyond eggar to be reunited with my son. It was the hardest thing to not have him in my arms, not to smell him, and not to be just with him. My body craved my baby, it ached for that little child.
I was soon met with my husband and we were told what they suspected it to be and what would need to be done immediately. This talk happened in the hallway as they were prepping him in his room in the acute NICU. I can remember the smell of anti bacterial cleaner, plastic, what scrubs they were wearing and what the sky looked like- it was grey.
Our son had an extremely rare infection. It was Neonatal Necrotizing fasciitis (NF) of his umblicus.
“NF is commonly known as flesh-eating disease, his was of is umbilical cord stomach area. It is an infection that results in the death of parts of the body’s soft tissue. It is a severe disease of sudden onset that spreads rapidly. Necrotizing fasciitis (NF) is a predominantly adult disorder, with bacterial infection of the soft tissue. In children, it is relatively rare and has a fulminant course with a high mortality rate. In the neonate, most cases of NF are attributable to secondary infection of omphalitis, balanitis, mammitis, postoperative complications, and fetal monitoring” -American Academy of Pediatrics Journal..
My 7 day old baby was being attacked by this infection and it was trying to killing him. The neonatologist grab my arm below my shoulder looked me in the eyes and told me this was extremely serious and I needed to be prepared. At that moment the words hit me, but I hit back. I felt a surely rush of defiance, maybe denial, and momma bear energy to protect and I said that is not how this is going to go. He’s story doesn’t end here, and I meant it. I wouldn’t let them tell me otherwise. This energy I never let up on. I was not going to let the defeat of his body take his soul away from us, this world. I prayed again and did my first post to the world for help. I pleaded with everyone of every faith to provide me with tools, prayers, thoughts, love, meditation, tokens, charms, holy water, blessings everything and I used it all as instructed over the months that followed. But in that moment I need everyone to be my pray warriors and I enlisted all graciously and thankfully.
They were prepping him for surgery to go in and cut out the tissue of the worst of the area about 30% and hope that would get it under control and stop the spreading of the NF. While this surgery was happening they were also aggressively going to begin treating him with all the antibiotics (known to man) to stop the spread of the infection internally as his body was struggling with this hostile take over.
At this point to go through all the updates in full detail, by agonizing day by day, moment by moment- I don’t want to relive. So I will post my logged notes that were on my phone from living in the NICU with him. He had a total of 9 surgeries before 2 months old and many of times were very dark.
I baptized him, blessed him, people around the world were lighting candles and praying for him. We daily were in the present of the spirit and being protected & guided. It was tangible. I know he felt and knew it too. Thank you again if you were one of these caring and priceless people who did this for my boy. The power of prayer, perception and mental tenacity & fearlessness of no defeat was the magic of his miraculous healing. The perfect combo of skilled, loving medical care and power of positive mental outcomes for this baby. It worked.
He has scar tissue and we will not know if more surgeries are needed to repair this area for a couple months still, but he is beyond thriving, happy and has the most wise, charming, kind spirit!
From this experience and overcoming this obstacle thrown at us, I’m forever indebted to his dedicated care staff at Rady’s Children’s Hospital (they are real life super heroes and my angels). I connect all day with spirit and know it is all around us waiting to be connected to. I promised to continue to thank spirit and communicate with spirit for my higher self realization for the rest of my life. Power of Mind & Prayer.
I learned being so present for such an extended period of time how to find the joy in fear, joy in pain and joy in darkness. I came in everyday thrilled and with a smile to see his care staff, have one more day of him healing, and a new day to make strides. I actually found peace in it all and immense love for my strong baby, medical professionals and the community that wrapped us in their love.
I’m forever changed not just because I had a child, but I had a child who brought me back to spirit, god. Restored my faith, trust and deep profound respect for the happenings of the Devine. Especially the ones not easily explained all the daily little gifts we take for granted. I now see am present with and openly thank for being bestowed on my life.
Here is my log from the first day to the last. Following is also the amazing list of his care staff- we had all hands on deck and each of these names were his angels of care and I deeply love them all.
Bradford updates (UNEDITED):
Omphalitis with Necrotizing fasciitis (NF)
2/9 11:50am out of surgery- surgeon said he did really well. This patch they put on he can have for a month if need be and should help him stabilize. Now we just need his body to stabilize and let him get healthier and continue to fight the infection. He is so strong, a major fighter and he is doing everything everyone is asking his little body to do. He is still in critical condition, but all these small wins will get us to the big victory. He is heavily sedated but we know he knows we are here with him. He still has a long ways to go until we can all truly breath, but he is doing it!!! Please continue to hold him in your thoughts, heart and prayers and this is going to be a marathon. We are anxious to see him again as soon as we can get back in his room. But right now thank god he did well and hopefully this last surgery will help him get healthier and stronger to start the healing and recovery process. We know today and tomorrow it might get a little worse from surgery, but I can’t wait to make an more positive announcement that he has caught up and turned the corner back to perfect health. Thank you deeply from our hearts as the support kind words and prayers are really fueling Elliot Canter and myself right now. It truly means the world to us. Now we pray and wait for his body to catch up and stabilize.
Bradford is out of surgery, everything went well and this will help his forward progress . He will have some setback because of the surgery, but now he can move further forward and can continue to improve over the next week or many weeks with this more stable covering to his abdomen.
He is still fighting the infection, he is still swollen and needs to keep peeing, he still is on a ventilator, he still is on a huge cocktail of drugs and antibiotics and he is still is strong.
This is a marathon, but every day he is taking steps to the finish line. Bradford continues to be amazingly resilient and moving forward. Thank you for your positive thoughts and prayers ❤️❤️❤️
20 days old today and day 14 in NICU he is now able to look and focus on me when I speak to him.
It almost feels like I just gave birth to this baby all over again and our eyes are meeting for the first time. My heart literally has exploded.
Thank you everyone.
Got to hold my baby today. First time in 15 days. The nurses and doctors made it happen for us today- it took a lot of coordination-Despite him having so many tubes, etc. I was able to hold him on his little mattress for an hour. I sang, kissed on him and talked about how strong he is and how perfect he is.
He looks amazing- just a little head swelling still, but so much better. He was peeing so well that they took out the catheter- folly and he is just using diaper. He also took a big poop today!!! W were able to go down on the morphine and also breathing support.
Vitals stable, blood pressure good. Edema remarkably better- sedated, he is responsive. Still getting biowel out of the cord- stomach juice but pooping (4 times since last night). Respitory doing really well still on ventilator- heart eco looked better than before – if he handles the weening off the nitrick tonight and possibly off ventilator tomorrow. ID: keeping on antibiotics. Neuro dr. Gold says he can stay off eeg – head ultrasound this morning was normal. Presidexts and morphine are sensations and adoven or morphine as needed. They are thinking MRI tomorrow afternoon.
update 2/20 1:30pm:
He just had an MRI (no results yet) to make sure his brain hasn’t taken a hit from all this. Also to make sure the seizures were just a moment due to everything he was going through and not of more concern. 🤞🏼 My mom intuition feels it should come back perfect. 🤞🏼
He has surgery tomorrow morning 8:30 to reduce the gortex patch on his abdomen. This was going to be today, but got moved due to MRI.
They are going to keep weening his support as he is getting stronger and also start weening the antibiotics as it looks like the infection has been concquered. Amen & hallelujah to that 💪🏻🙏🙌
Thank you for continuing to send love & light to our son. He’s responding well to everything and doing what is asked of his little body- he is so strong!
He’s out of surgery (went in at 9) and he handled it very very well. The surgeon explained on a (good)1-10(bad) scale , his first surgery was a 15, second a 7, third a 5 and this one a 1.
He was pleasantly surprised that he could reduce the gortex patch (which pushes his intestines back in his body) more than he expected today. About 40%. Due to this he would like to repeat this surgery again next week, he mentioned Thursday or Friday, but did say earlier if the neonatologist team thinks he is stable. He still is on ventilator and a lot of support. I’m opening they will be able to get him off the ventilator in the next day or so and hopefully start giving him some breast milk shortly after. He’s so beyond strong, calm and beautiful. The surgeon is saying that this is now a new chapter in his care. Going towards recovery and rebuilding, which is thrilling and very assuring to hear. To be honest, I’m still in survival mode and haven’t caught up to how well he is doing. This recovery, rebuilding will be years of surgeries and being at the hospital, but I’m so delighted to be having those conversations. Today, I’m prepared for him to take a little step back as that is what is common with him after surgery, but he is still the strongest he’s been since coming into the hospital. Thank you for all the love and support. We can’t tell you how much it fills us up, is a great motivator/ reminder and makes us not feel so isolated as this experience real does make time and life stop. Thank you and I look forward to continuing to post nothing but positive small wins and progresses on here. Xxoo
Dr. Gold MRI back and spoke with neurologist- nothing abnormal. He will stay on anti- seizure meds for 3 months and then be retested.
2/22 off ventilator today!! Also weening antibiotics and morphine drip.
The sun is out today and we had a GREAT day!
This handsome, strong, calm boy has officially turned a corner towards recovery and getting back to being a #newborn.
He has made incredible progress in the last 2 1/2 weeks after many days and even weeks of incredible fear.
His medical team calls him a miracle baby and they are in love with his spirit & soul. Many call in on their days off to know what’s going on with him. He’s a very special baby and not just because he’s mine.
I’m so impressed and awe of him and what this little giant has gone through in his young life. This is not without a heavy heart over flowing with love and appreciation to everyone who has prayed for him. As well as for his incredible medical team- who all got personally invested in saving his life. I believe in the collective power of prayer and believe that it was a main reason and the medical team we are here today. I think it’s safe to say we’re out of the original darkness we were in and now able to see the sun/ son. It will be a long road ahead filled with many surgeries and some unknowns, but our son is here. I will be with him on this journey.
He has already taught me so much in his 3 1/2 weeks from being born. He’s a wise soul and I can’t wait to learn more from him over many many years!
Thank you again to everyone who has sent messages, made us meals, had their churches, temples or communities pray for him. It means so much to my husband, daughter and me. We are forever grateful to everyone who raised us up and surrounded us in your love and light. Thank you 💖🙏💖
#smallwins equal #victories #strongasamother #nicu #niculife #strong #babyb #babybradford #momlife #beautifulbaby #nicumom #3weeksold #proudfamily #proudmom #mybabyboy #SMF
2/23 27 days old -7am: he is officially off the morphine drip and they are weening the presidex as well (that one is a nasty pain med). As of now he is not on withdrawal drugs to help, but does have little shakes not bad tho. He is has a pacifier and seems to like that now. Today brought in a music player the seahorse and he likes it while resting. Plan for surgery on Monday most likely. Lowered the oxygen going in his nose as well and the biowl green stuff out of his gut is still happening so not bottles until that is cleared more. Got to hold him with out the Z flow mattress – in my arms for 2 hours today!!!
Having a hard morning they started weening him from his morphine drip (that’s gone- just now as needed) and started to ween presidix (really nasty drug) he is having a hard time being weened off that. My poor baby is a little addicted from 3 1/2 weeks of these super heavy drugs- he even developed a tolerance where they had to go up on them last week. I think later today they are going to start him on withdrawal meds to help. He was inconsolable and it’s heart breaking.
He is going to have his 6th surgery to reduce patch this Thursday. The tube to his intestines is out and working on him eating. They tried over night, but he didn’t care to much for it. They will try again at 11:30. His red blood was low so they did a blood transfusion this morning. Other than that he looks great no PRNs of morphine just his scheduled doses and the presidex wasn’t weened yesterday so I’m sure they will do it today.
They ended up trying to feed him again and he ate 5 milliliters. 🙌
Up to 10 ml every three hours. Surgery to reduce on Friday morning. Weening the presidex today again by .5 as they have been doing. Today they found an ulcer on the back of his head. We will all watch it. They say he will just be missing hair there long term, but it should not be anything worse. I’m also giving him my nipple to play with but he doesn’t want to latch just plays with it.
Surgery again today to reduce. He is up to 20ml the in feedings since yesterday. Working with OT on proper bottle feedings and reintroducing my breast. Ulcer on his head is healing it looks like. He’s listening to jack johnson right now sleeping which is great because no food until after surgery.
3/13 7pm: breastfeeding like a champ. Now for the last two days gets to breastfeed when I’m here and then bottles when I’m not. Can eat as much as he wants. Surgery pushed out to next week. Ulcer still there but going down. Working with PT on his muscles 💪🏻 and stretches. Today I did all his cares (day 39) all by myself. Dressings, weighing and diapers- moving equipment in and out of bed. Nurse basically left me to it.
He is having surgery Monday the 18th. Working with physical therapy on his shoulders and back to stretch them and thumbs. Today we decided to do fortified feeds when I’m not here to increase his protein and nutrition. He is not trending on the curve they want for growth. He also qualifies for the critical baby care when we get discharged. This gives him OT, PT, development and speech therapist after discharge to make sure he is on target until 3. Fairbanks today mentioned having the team here create a shield for him. More on that later.
3/17 prolacta human breastmilk trying to figure out formula situation
3/18 7th surgery. Going in at 4:30 pm was going to be 2:30pm. Was out by 5:30 and got circumcised as well 😩 – this time he came back in very noticeable pain and very upset. We ended up taking breathing tube out immediately and then more morphine, tyonol and gave him a total of 30mls of breastmilk that seemed to calm him down. He is now sleeping 7pm. This was the most angry 😤 and in obvious pain after surgery.
3/19: better day today he got upgraded to a crib. We also after a lot of leg work by me and research we have landed on a fortified to add to my breastmilk, nutramigen concentrate. He started it at 6pm. He will only get it while I’m not here.
3/22 weight gain, four days with fortified breastmilk – changing to every other feed straight breastmilk then fortified when I’m not here. Weening off of presidix is harder for him than ever. Yesterday had a late night with him trying to comfort him. Started caldomen to help him come off presidix. Withdrawals yesterday were pretty bad.
3/24 They reduced tpn from 10 to 1, and they are going to replace with saline some time soon , he’s eating great – been doing 100ml
3/26 : he is off TPN now. 8th surgery on Thursday this week or next week.
4/1: not an April fools joke he went in for 8th reduction surgery- it is almost closed. Did well, but this time in a lot of pain. Still weening off drugs and also waiting to see if the patch has an infection if so then will be taken off by dr. Fairbanks. Also still working on getting his feeds up.
4/2 : dermatology came by and did culture gram stein for thrush in mouth, from the two zit things – bacterial wound culture and one for fungeul culture with scalpel back on neck.
Did not like the way it looked.
The head dermatologist came by and said it wasn’t what the other dr said, but was melaria, a heat rash common to 2 month olds.
4/3 : Laura from ortho tech making his patch today. Didn’t like the first version for daily use but great for car seat, stroller etc.
4/4: gortex patch starting to come off. On lowest dose of presidex. Tomorrow ween morphine and by Saturday be off both. Big weekend if goes as planned.
4/6: today he got his pic line out and has no IV or cords in him!!! He is off the presidex and morphine. He should be discharged by 4/9.
4/9: we get to go home!!!!!
Care Team (Unedited as well):
Nurse is Angela, Ruth (day love her energy and positivity ) Courtney at night (she was on it his first night with blood pressure and breathing)
Dr. Kling was surgery doctor excellent and her team of male doctors. Did first surgery.
I love you all and we miss you, but happy to not be in the NICU anymore. I love the care team that outside of the hospital is still in touch and in our lives- priceless.
Like I’ve said many of times, It’s what I imagine what going to war would be like. Total strangers from all different backgrounds, but unit in team work for one common goal. You become isolated and so tight knit spending this amount of time together in such stressful situations, there is no way those bonds can ever break.
Love to all from me and my 1 year old!
-Mom of Baby B
ACUTE NICU, baby b, BABY BOY, baby bradford, BRADFORD, BREAST PUMP, doctors, ER, HOSPITAL, nicu, nicu grad, nursing, one years old, prayer, radys, saved, spirit, thank god
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