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):

2/3 immediate surgery to remove around umbilical cord to hopefully get all the dead tissue before it spreads. 

Omphalitis with Necrotizing fasciitis (NF)

2/4 second surgery around 5pm out in 45 minutes.
He’s out of surgery he had to have 60% of his abdominal wall removed. This was as much as they could take before quality of life and had to be done. They removed all of what they could with the tissue that was infected. His vitals ok and color returned . He is strong and with the infected tissue removed it will help his chances. The next 12 hours are critical. Thank god for Cindy from the CHET team for giving me a care pack to clean my self and take care of my postpartum body in here. I having to leave his room to pump.
2/5 5:30am They said everything looked good with what they did. Now antibiotics need to do their job. And he needs to fight the infection.  Cautiously optimistic.
2/5 1pm Just a short update. Then infection doesn’t seem to have progressed since yesterday. And it is being closely monitored. They got some cultures back and the antibiotics he is on will take care of the ones that they found so far.  He just needs to fight off the infection and it cannot spread.  We left him with the doctor and nurse while they were changing his dressings. 
2/5 6pm. The surgeons came by, it’s been 24 hours since surgery and they said it looks ok, not worse not better. So he’s fighting and we made it through the day. His heart rate (too high) has been an issue because of all the effusion/fluid loss from surgery. But they are working on it and monitoring as well. He’s still strong and this infection must go. Still critical, but he’s fighting. 
2/6 7am We’re with Bradford this morning.  The surgeon just came by and said everything looks the same which is good. No more surgery now for over 40 hours. It seems like he’s fighting the infection  but everything is still  very critical and hour to hour they are monitoring his heart rate because still trends hi with the fluid loss from the surgery. They did an EKG and his rhythm is normal. 
He is strong and he is fighting. 
2/6 1:30pm surgeons came by drew on stomach as it began to get red. Watching closely. Heart rate came down to 209/210 range after all morning in the 220’s. He is on a new breathing machine and seems to be helping a lot with the co2. He is puffy due to the fluid game we are playing. All other numbers from labs look good still.
2/6 2:45pm: Surgeons came back, possible new area that is of concern, but not as large as what could have been. We are still in a wait and see phase of healing and hopefully the antibiotics continue to work. Heart rate and blood pressure slightly improved. They are adjusting his medications, to best support this as he fights the infection. The cultures all came back as what you would find with normal skin . They stopped requiring the nurses /doctors to were protective gowns. No Mersa or any unusual Bacteria found. Which is good. 
Bradford is strong and fighting this infection. 
2/6 9:30pm 
Bradford vitals have been slightly more stable. They’re figuring out what he needs and are staying ahead of it. That is good. He still has the possibility of infection going on in one area above where the last surgery was, but it hasn’t progressed significantly and it hasn’t gone away. 
One of the tests which shows tissue damage which could be from infection or the surgery went down. Which is good. 
We are cautiously optimistic. At the same time all of the fluids and medications are putting a lot of stress on his body and that is being monitored as well. He had to go on a more gentle oxygen Machine today because of fluid retention making it harder to breathe and they are still considering him very critical.  
He is strong and is fighting.
2/7 8am :The doctor just updated us with Bradford. 
They were able to make some adjustments to his meds last night and bring his blood pressure down from 180-200 to 150. Huge gain for Bradford. 
To help his healing they have had him on paralytic medicines, but when doing so they can’t monitor if he is having any seizures which can happen. They  proactively hooked up a brain wave monitor and he showed everything normal until 4am when he had a long seizure. Because of this they added an anti seizure medication and he has not had any since. 
The infection visually appears to be stable, but some tests show that it is still a concern. But the more time that passes, the more the antibiotics can do their job.
2/7 9:45am: Cultures taken from the borders of the last surgery did not grow anything after 2 days which is a great indicator supporting the good color change, supporting that he/the antibiotics are fighting the infection off. 👍👍👍. He’s strong, he’s fighting, thank you for your positive thoughts and love!
2/7 11:30pm elliot started Accupunture points to help pee and also they put him on meds to pee – it’s working! 
2/8 11am:
The goal yesterday was to Pee and to improve his oxygen levels and fight the infection. His body needs to get rid of the swelling. He did great yesterday and peed almost 3 times as much is the day before. This is good. Oxygen levels also improved. Which is amazingly good.
Today’s goal is to do the same and better. He still  is swollen and will benefit from continuing to pee.
The infection has not progressed and appears to be decreasing which is fantastic and allows for the next phase of surgery and treatment.
He has not had any more seizures since yesterday with the current medications. This is good.
The surgeon came in this morning and says that he’s almost ready for the next surgery which is to close the abdomen with a more permanent covering. 
This surgery,  still scary, but necessary will allow him to be more stable continue to heal and progress.
This is a tight rope roller coaster and he still is constantly being monitored minute to minute. Bradford is strong and he is fighting. 
Thank you for your continued positive thoughts, love support and prayers.❤️❤️❤️
2/8 5pm:
So far today has been a fairly good day. He’s still on a ventilator and taking a huge cocktail of medications, and anti biotics but the hospital staff is doing an amazing job of monitoring and adjusting   everything constantly to keep him as stable as possible. 
The infection seems under control for several days now which is wonderful. And Bradford continues to pee! Which is helping reduce his inflammation. He still has a way to go but he’s on the right track. 
The surgeon will asses Bradford tonight or tomorrow to see if he’s ready to have surgery to cover his abdominal wall with a gortex patch.  This patch will help with fluid balance and help stabilize him. There is a long road ahead for him, but that is good, he is taking one step at a time. Bradford is strong and he is battling his way back to health!Thank you for your positive thoughts,  continued support love and prayers. ❤️❤️
2/9 11:05  13 days old 
He is going into third surgery now in his room. 

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. 

Dad version:

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 ❤️❤️❤️

2/9 8:20pm :
Today Bradford  did well from the surgery. Now the nurses and doctors are constantly monitoring him and adjusting oxygen, medication while keeping him comfortable and watching his fluids in and fluids out. 
It’s a constant effort by their staff. He’s in a much better place but he is still critical and will be that way for a while. 
But for now he has turned a corner and is doing so much better. But there are many corners to turn and he needs to take one step at a time. He is so strong and resilient. Thank you for your positive thoughts and support.❤️❤️❤️
2/10 9:30am:
Bradford doing good, after surgery-last night he had to have his support levels increased, as expected after surgery, but now he is trending better and has had support levels reduced. We are still trying to reduce the inflammation/ edema in his body. He needs to continue to pee.  But he is strong and fighting.  Thank you for your positive thoughts and prayers ❤️❤️❤️
2/11 7pm update:
Today was a day of monitoring and adjusting medications and oxygen levels to keep Bradford as stable as possible as he continues to fight for his health to return. He continues to pee which reduces his swelling. And he started getting breast milk today very small amounts through a small tube that goes into his stomach, which is great for getting his nutrition up. 
There will be many more long days like today but he’s trending the right direction. 
Bradford is strong and he continues to fight. Thank you for your positive thoughts and prayers.❤️❤️❤️
2/12 11:45am: at this point looks like no other surgeries needed to remove anymore infectious tissue. 
Right now the issue is his poor body to catch up and also get the infection completely gone and heal. His edema is really bad and playing the game of trying to keep his heart, blood pressure and oxygen all in somewhat stable levels so he can heal and make his way to recovery. Right now we just need his physical body to catch up. He’s doing it but this will be a very long process. Food tube had to come out because he didn’t respond well to it Yesterday. All the advances we did yesterday he wasn’t ready for so last night was hard- this morning they have him stable again and aren’t going to make any changes as his body told them it’s not ready. So it’s constant adjustments and proactively responding to him. His nurses don’t stop. They are working so so hard. 
.
2/12 7:30pm 
Bradford had another day of monitoring, adjusting and being kept comfortable. He likes to do things at his own pace, so we’ve learned to do changes for him slowly. He doesn’t like his progress pushed. That being said swelling has gone down quite a bit and should continue to do so. With each day the infection improves more and more.  Bradford is strong and he’s fighting hard. Thank you for all the positive thoughts and prayers ❤️❤️❤️.
Update 12/13 12:30
Dr. Moyer wants to stop fental drip and go to a morphine drip. Ordered test for his kidneys, infection cultures(urine, blood and mouth swab) and also an echo for his heart. She wants to rule out that his blood pressure and oxygen are not correlating to his kidneys or heart. She also wants to make sure they are adequately supported. Last echo was on the 7th so time to repeat anyways. He is strong he is fighting and the pee output is good. Infectious disease came by and the powder is growing something and they will know by Friday exactly what. Edema is still an issue, but can take time. Other than that he is doing it everyday and everyday is a blessing and one more day of getting closer to the goals asked of him. 
2/16 6pm:
after the last couple Days of trying to ween him off the isolator machine  and playing the game of fluids and oxygen levels-
Today was the day he was ready and happy to come off that breathing machine and back on the normal ventilator. All vitals are stable and peeing really good. Edema has also gone dramatically down. He can now open his eyes and move more. 

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.

2/17 3:30pm:

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. 

#bestdayever #everydayisablessing

2/18 2:20pm

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. 

2/19

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! 

2/21 10am:

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

2/21 2pm:

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!!! 

2/24 noon:

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.

3/4 9am:

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. 

3/4 7pm:

They ended up trying to feed him again and he ate 5 milliliters. 🙌

3/6 1:30pm:

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.

3/8 6am:

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.

3/15 1:30pm:

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):

Bradford’s staff

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.

Transport staff: Libby & Linea & Cindy( the one who got me pad and wipes great hugs super sweet to me)
Dr. Kimbal really direct /had several days)
Dr. Antonia mexel (dr. 2nd day)
Dr. Niemi- fantastic explains things really well. Day shift- Have has several times.
Sam Respitory nurse (3rd day)
Keisha nurse in charge (2nd day didn’t talk to much or see)
Surgeon day two dr. Fairbanks (male)
Night two nurse Marie (really great!)
Dr. Honors night doctor Argentina – guy
Third day Gretchen respitory nurse- love her.
Ashely day nurse (young- but a boss)
Benjamin Keller under the two surgeons he also is a surgeon and dr. Ingeler.
Third night nurse Katie – she’s great and also did night 4.
Nurse practitioner- Angela with glasses short hair was on top of his heart and ekg
Barb np day four  short hair wears cross necklace and works with Nedy is her new np.
Nedy np new grad /dig her.
Luctchi charge nurse (very very much sweet)
Dr. Ryan is the infectious doctor the girl blonde -super smart.
DJ / Donna joe holistic nicu manager (day 4)
Monica social services girl
Ann Healing touch/ supervisor  (day 4) and also Lisa (likes her a lot). Karen was the best healing touch.
Lora dietitian – into formula and supplementing him once he can eat again, but on his TPNI bag.
Dr. Carroll neonatologist on our arm band (day 4)
Cynthia front desk lady
Dawn np (blonde hair clip)
Katie and Haley night 4
Arjho RN tag teaming with Ruth (day 5) red and black glasses. This is a dream team.
Andre is the respitory (day 5)
Dr. gold is his neurologist (day 5) didn’t meet yet but monitoring his little seizures
Kelsey social worker in place of Monica (day 5)
Sam lance (day 5) plastic surgery person (haven’t met but they are now starting to talk with him).
Dr. Lazra other surgeon working with Fairbanks – he had glasses (day5)
Dr. Evans neonatologist on 5th night ball buster in flip flops! She is a super boss.
Haley B. & Katie Z. Nurses night 5 love their calm energy and sweetness. Made Bradford cool ray bands. sweet care.
Hani respitory therapist night 5 (really on it)
Jackie and Susie nurses – Susie retiring in dec. Jackie young likes my shoes very very sweet (day 6)
Andre respitory day 6- really follows up on Bradford.
Dr. Benum resident under Fairbanks and Keller  tall guy usually doesn’t talk much. Wears navy blue jacket.
Taryn his nurse (night 6)- very tall.
Kimbal & mexel (blonde braces) doctors (night 6)
Hani back again (night 6)
Susie – (loud one day 7) dig her, but took a minute to vibe her high energy.
Eric repository (day 7)- pro and teaches
Whitney NNP (day 7)
Niemi  md neonatologist (day 7)
Dr. Speziale  neonatologist- male always in button ups (night 7)
Taryn nurse (night 7)
Jill charge (night 7)
Kristina respitory (night 7)
Vee, Cynthia and Michelle front desk
Keisha  nnp (night 7)
Yahgha nurse (day 8)
Barb NNP (day 8)
AK niemi (day 8)
Taryn (night 8)
Dr. Sweeney (female night 8)
Karen watched him while girls on break (day 7)
Ruth (day 8)
Eric respitory (day 8)
Dottie for Ruth’s breaks (day 8)
Dr. Tovar infection dieses  (day 8)
Dr. Moyer neonatologist (day 8)
Angela NNR (night 8)
Nurse Michelle (night 8)
Cara RT (night 8)
Dr. Kimball (night 8)
Barb (day 9)
Ruth (day 9)
Dr. Moyer (day 9)
Rochelle nurse (night 9)
Hani  RT (night 9)
Dr. Speziole (night 9)
NNP Tasha (night 9)
Andre RT  (day 10)
Maggie (day 10)
Sandy with Nedy (day 10)
Dr. Tovar infectious disease (day 10)
Dr. Honolds (night 10)
Angela NP (night 10)
Rochelle (night 10)
Kristine RT (night 10)
Dr. Moyer (day 11)
Andre RT (day 11)
Tamyra nurse awesome! (Day 11)
Laura & nedy (day 11)
Meredith nurse (night 11)
Kristine RT (night 11)
Elana  nurse (day 12) she is older and heavy handed with him. – he is 19 days old today.
Gretchen RT (day 12)
Ruth (day 13)
Gretchen (day 13)
Katie B  nurse with scar we like her (night 13)
Cennavino infectious disease doctor (day 13)
Ruth (day 14)
Dr. Moyer (day 14)
Gretchen RT (day 14)
Day 14 on regular ventilator and eyes open!!!
Harry RT (night 14)
Michelle Gray  (Night 14)
Dawn NNP (night 14)
Iris front desk (night 14)
Ruth (day 15)
Dr. Moyer (day 15)- got to hold him today 3 weeks old today. This Neonatologist I connect with deeply.
Taryn (night 15)
Yahna 16) – took the folly out
Gretchen RT (day 16)
Dr. Weiss (day 16)
Barb & Nedy (day 16)-22days old- Love this team. Barb is so good with Bradford and is on it.
Taryn nurse (night 16)
Dotti nurse (day 17)
Dr. Weiss (day 17) with fellow dr.
Gretchen RT (day 17)
Dr. Bernard  infectious disease fellow (day 17) – day 10 of gortex and silo take off.
April NNP with Nedy today (day 17)
Tess (night 17)
Ruth nurse (day 18)
Sam RT (day 18)
Dr. Gloria hwang anthestiologist (day 18)- MRI
Dr. Moonley ID (day 18)
Michelle nurse (night 18)
Dr. Stansey athestiologist (day 19)- surgery day to reduce
Ruth (day 19)
Sam RT (day 19)
Michelle (night 19)
Tamyra (day 20)
Sam RT (day 20)
Dr. Evans (day 20) – excavate day.
Barb (day 20)
Dr. Weiss (day 21)
Barb (day 21)
Arjho (day 21)
Vanessa travel nurse (day 21)
Amy Wong nurse (night 21)
Dr. Carroll (day 22)
Alex nurse and Ann took over (day 22)
Labs tomorrow morning- Monday’s
Nurse hailey (night 22)
Michelle G. (Day 23)
Dr. Kimbal (day 23)
Stephanie S. (Night 23)
Jane (day 24)
Barb & Tasha (day 24)
Julia – nurse but like a manager (day 24)
Jessica Bittman nurse (night 24)
Dr. Markis surgeon greek
Michelle (day 25)
Jessica again (night 25)
Tamyra (day 26)- surgery day to reduce 5th one
Jessica again (night 26)
Tamyra (day 27) and Ashely split shift.
Alexa (night 27)
Ashley and tamyra split (day 28)
Alexa (night 28)
Shay (day 29)
Courtney (night 29)
Ruth (day 30)
Stephanie B (night 30)
Michelle G (day 31)
OT Ann (day 31) – Finally get to breastfeed again! Amen.
Stephanie B (night 31)
Michelle G (day 32)
Stephanie (night 32)
Tamyra (day 33)
OT Ann (day 33)
Megan m (night 33)
Krissy  aka Christina from Transport team and switched with Ashley D. Both awesome (Day 34) 6th surgery to reduce
Dr. Fairbanks and team. (Day 34)
Haley b. (Night 34)
Erin W. (day 35)
RT Nikki (day 35)
NNP Nedy & TAsha (day 35)
Dr. Kling came and checked him (day 35)
Hailey (night 35)
Ruth (day 36)
Dr. Moyer (day 36)
Hailey (night 36)
Michelle (day 37)
Dr.libel (dr at ER dr in encinitas transfer day-day 37)
Teresa (night 37)
Ruth (day 38)
PT -Linda
OT – breastfeeding ANN
Wound mary Ann (day 38)
Dr. Libel (day 38)
Stephanie (night 38)
Justine nurse (day 39)
Courtney nurse (night 39)
Tamyra (day 40)
Jennie C. (Day 40)
Megan and Karen from healing touch (day 40)
Barb (day 40)
Dr. libel (day 40)
Ruth (day 41)
April NNP (day 41)
Linda -PT(day 41)
Carrie L. (Night 41)
Melissa (day 42)
April NNP (day 42)
Michelle (day 43)- st. Patty’s
April NNP (day 43)
Michelle (day 44)- 7th surgery day
Barb NNP (day 44)
Gretchen RT (day 44)
Deya night charge and nurse (night 44)
Harry RT (night 44)
Dr. song neonatologist (day 44)
Ruth (day 45)
Barb & Nedy (day 45)
Abbey R (night 45)
Ruth (day 46)
Kelly flores (night 46)
Tamyra (day 47)
Halley s (night 47)
Dr. song (day 47)
Ashley primary (day 48)
Dr song and dr kimbal (day 48)
Halley (night 48)
Maggie  & Angela (day 49)
Halley (night 49)
Maggie (day 50)
Halley (night 50)
Ruth (day 51)
Halley (night 51)
Tamyra (day 52)
Sonia (night 52)
Ruth (day 53)- 2 months old today!
Haliey (night 53)
Tamyra (day 54)
Jillian Travelors  (night 54)
Ashley primary (day 55)
Katie – child life specialist (day 55)
Olga- (night 56)
Ruth- (day 57)
Olga – love her (night 57)
Ruth – (day 58)
Abbey (night 58)
Ashley- (day 59) – 8th surgery
Sonia- (night 59)
Ashley- (day 60)
Dr. Soeprono and dr. Freelander   Dema – (day 60)
AK- md (day 60)
April & Nedy (day 60)
Akua (night 60)
Michelle (day 61)
Yvette (night 61)
Michelle (day 62)
Yvette (night 62)
Ruth (day 63)
Haley (night 63)
Ruth (day 64)
Natalie e (night 64)
Ashley D. Primary ( day 65)- She’s pregnant and I’m so so happy for her. Lovely news.
Haley (night 65)
Ruth (day 66)
Megan (night 66)
Michelle (day 67) – last day!!!
Dr Moyer (day 67)
Nedy (day 67)

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

Allison

xxoo

 

 

 

 


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