Since Facebook won’t let me share….

https://thesupermom.org/2024/jessica-gregory-4

It’s been awhile…

So it’s been a long time since I’ve posted. So many things have changed. So many things are a continuous uphill battle…but things are going! We said goodbye to Bay Ridge, Brooklyn last summer and moved to our new home in Long Island! Brenden is in Kindergarten and Juliana is in 2nd grade at the same school! During the pandemic and up until now, I’ve advocated (and won) battle after battle on behalf of my children when it came to their education and health/safety with Mike…I lost about 70lbs due to better life choices and also stress (reminding myself not to eat like an animal when times get tough)…and managed to survive my own worst enemy…extreme anxiety and depression. There’s so much I can say about the great things that have happened over the past few years as well as all the hard things we got through as a family…and so much so can say about the disability discrimination we have faced over the past years…but I will get to that eventually!

For now, I am going to start to slowly start adding to this blog again. I’m also going to use it as a way to share advocacy resources, supports, ideas and even great purchases I’ve found useful as a Mom of 2…as a medical mom…as a special education teacher… and just as a woman in general! I feel like the hardest thing for me in the past 6 years was finding my “village”…and I hope that maybe my blog can become that for other parent/caregivers like myself.

More to come!

The year the world went crazy

It’s been a long time.

I’ve been wanting to write. It’s just that every time I started, I would become overwhelmed with facing reality. In order to write the truth, I have to confront the truth. And the reality is that since the last time I posted, my world…the whole world…got more and more confusing.

I can’t physically type all the details but it started  with having to give Juliana CPR after a seizure caused by an unknown virus. Looking into her blank eyes with utter desperation as I attached her to Brenden’s machines, and let God guide me and Brenden’s nurse to bring her back. Her lips turned from blue to pink again. 

It was my birthday and she was about to give me the surprise cake she made me with Mike…she told me to act surprised but wasn’t acting like herself. Her skin changed and shortly after she was seizing. 

We saw signs but were confused because this isn’t the child that shows signs. She was the “healthy one”. But we saw the signs and thank God that even though it shocked us, we were prepared because of Brenden. 
Emergency responders arrived. 12 of them in my bedroom. Confused by miscommunication to “make an arrest” instead of “cardiac arrest” they tried to detain me instead of helping my baby girl who laid limp on the bed, attached to her brother’s oxygen tank and pulse oximeter. I am so thankful I had gotten her stable enough that their awful mistake didn’t cost us. I’m thankful to the nurse that was there and to the one firefighter that actually listened and freed me as I yelled from the bathroom for someone to please take her to the hospital. 

Flash forward a few days. Juliana is miraculously fine and back home. No diagnosis for what happened besides febrile seizure. Suddenly, I am passing out. Confused. Head pain and neck pain. Doctor diagnosed me with being traumatized from what happened and from my life as a mom to a medically fragile son. I could barely form words coherently as he patted my shoulder and called me “poor baby”. He sent me to a psychiatrist next door with muscle relaxers and antidepressants when in actuality I was extremely ill with an infection causing swelling to my brain. I begged the psychiatrist through my inability to explain my thoughts to help me because I didn’t think I was crazy…just sick somehow.  I needed to get better to take care of my children! He looked at me sadly and did walk me back to the doctor reluctantly. They took a few more tests. A day later, I found out I was indeed very sick. WBC were scary high. Juliana’s issue was never fully diagnosed but mine turned out to be caused by strep. A strep infection that never hurt my throat once.

Fortunately, Mike believed me so I had been quarantining with Juliana to keep Brenden and Mike safe. Juliana and I stayed in my bedroom for a week. When we finally emerged from our cocoon of chicken soup, water, crackers, toys and The Trolls movie…we went back out into the world heavily medicated only for the whole world to shut down.

You all know what happened.

COVID-19.

And from the trauma of everything else, we knew to batten down the hatches. We stayed home and went nowhere. The first 100 days, none of us even went outside except to walk Bailey. It was too risky. We had to lose nurses who didn’t take it seriously. We didn’t see anyone else. We made our livingroom into a ball pit, we moved furniture, we had dance parties and even worked/went to school….but we didn’t dare go outside. I became a physical therapist, occupational therapist, speech and feeding therapist and Mike became a home school teacher/TV editor while I became a remote teacher. We both became night nurses/respiratory therapists/doctors even more so than we were before.  I also continued my religious studies that I had begun the previous fall. While the whole world sat and stuffed their faces out of boredom, we were so busy that I lost over 40 lbs. We didn’t stop moving day after day as we waited for people to stop being selfish. Waited for people to stop complaining about boredom. Waited while people outside argued about people like us…the medically fragile…the high risk…whether or not we are worth protecting. We waited for the world to go back to “normal” as we realized what this world considers normal is not good enough. We desperately waited for the world to find a conscious. We stayed away from everyone we love. Waited while people complained about wearing masks while others were waiting for medical interventions that were on hold. Waited for chance to even get my kids some sunshine while people stood in front of our building, maskless, smoking cigarettes and complaining about politics. 
Long story short, it got to be a bit overwhelming. We moved. Got a yard. Got another dog. My kids can now go outside to play. We can barbecue like a normal family. My mom comes over regularly now and we are on our way to being fully  vaccinated. 

Still dealing day after day with the most insane bullshit you’d ever imagine. We took on the DOE and fought for a fair IEP. You’d think as a special education teacher this would be a easy process, but it’s worse when you know you’re being lied to….but, we won. Then, we took on the system…and personally taught Brenden how to drive a power wheel chair that we didn’t own at age 2 & 3/4 in order to prove that insurance deserves to buy him one. Right in our own livingroom. We advocated with suppliers, with therapists, with nursing. Everything is always a battle because we are still waiting for the world to be a better place. People are selfish and no one gives a shit except a handful. And I am thankful for that handful. 
But I am here. My kids are incredible. Mike and I are stronger than ever. Exhausted but we are here. We put out fires regularly and chug ahead. We barely sleep. And we are at this grind every day for our babies.  They are happy, always smiling and the smartest kids I’ve ever met so we must be doing something right. ❤️

2009 vs 2019

…2009 vs 2019…

It’s so much more than a before and after pic. In the last 10 years, I’ve been busy.

In early 2009, I changed so much about my life. I changed careers by leaving business to work at a preschool. I had just ended a toxic relationship and started seriously dating this guy I had met up with the day after Christmas ‘08. I went back to graduate school for the second time.

My father passed away in July of ‘09. On his death bed, I promised to make him proud. As my mother helped me get through my sorrow, she told me that no matter what I do in life, they will both always be proud of me. I should just follow my dreams.

Over the next years, I achieved my double masters in General Education/Special Education (making me have 3 masters in total when you include my first). I got my position as a Special Education teacher with the DOE at a school that I am still employed at. I worked hard, got tenured, and got numerous certificates, licenses and awards for my work/learning with special needs and social/emotional learning.

I moved in with that guy…got engaged, got married, went to Spain…and we started trying to create a family together.

We tried IUI. 3x. We finally tried IVF and created the most perfect gifted and talented embryo that would later become our incredible daughter. We got a dog to start our parenthood journey and waited impatiently for our princess to be born. She truly gave me life from her start. I had dreamt of her for many years before her birth and she brought every dream to life.  (I had also dreamt of another baby…one that I was always saving from danger…crazy, but true) The only thing I wanted more was for my daughter to have a sibling.

So we tried again…and again…and again. 5 failed IVF transfers (fresh/frozen). We finally got pregnant in between there…with what I will always believe was a son. Unfortunately, he left us before we could officially find out.  My body was wracked with exhaustion and loss. I prayed for my boy…prayed for God to give him back to me. Little did I know, but my husband was doing the same. We finally gave up on IVF for a beat, acknowledging that this just wasn’t the right time. We got a cat and tried to relax…

2 months later, all on our own, we were pregnant again! This time, it was a boy and he was stronger. He was a perfect pregnancy…well, until the very end when there were some complications.

In the past 19 1/2 months since his birth, my incredible son has given me more lessons than I could count.  I learned how to be a nurse, a doctor, a social worker, a researcher, a teammate, an advocate, a phlebotomist, a referee, a child psychologist, an educator on his disease, a care giver, an office manager, a scheduler…I can go on, because my roles are ever changing and growing. I’ve prayed like I had never prayed before. I hit rock bottom and picked up my boot straps and kept walking tall for the sake of my family. I learned that when the going gets rough, you can only depend on yourself to get through it. I learned through my children the meaning of resilience. They also taught me the meaning of life.

My children have changed my life. They’ve given me my purpose for living. My husband has become my best friend and the greatest teammate I could ever wish for. Our children’s love for us and each other is so pure, and they are both always smiling…so I know we’re doing something right.

So I may not look exactly the same, but I don’t care. I’ve earned every grey hair, every wrinkle and every flaw. I think I look damn good for all I’ve gone through in the past 10 years. I am not the same person I was 10 years ago because I’ve evolved. I used to be a people pleaser. After a long time of understanding and living in survival mode, I no longer put what people think at the forefront and focus on what’s really important instead. With so much more on my plate, I am even more reliable because I also know when to say “no” and I try my best to temper expectations. My mother continues to tell me that she is proud of me and the mother I have become. I learned so much by her example about love and motherhood… and am so thankful for the life I lead, despite how difficult it can be. I am now just looking forward to what the next 10 will bring!

We’re all blessed in different ways…

I haven’t posted in awhile & a lot has happened…but today I am feeling inspired to write.

The last two months have been horrendous. I don’t want to go into details. I’ll just say I think we are on the other side of it, but from the end of August until about a week ago, there was a lot of stressful then scary things going on. One day, I’ll give the details. However, for now…I am just trying to restore order in my life and home for my traumatized family. We’re just getting back to something close to our normal.

All that being said…

This morning, I took this picture of myself as I listened to two mothers talk about how their kids were once preemies. One is in Juliana’s dance class and the other’s child is a 20 year old athlete. For 30 minutes, I sat there in silence as they compared NICU stories (both less than 3 weeks), saying things like “omg it was horrible, she needed a ventilator for 2 days”, “I watched my daughter turn grey countless times”, “She wasn’t latching and they said she would need a feeding tube…could.you.even.imagine? That’s for like…REALLY sick kids”, etc…discussing how hard it was to deal with EI because one kid needed a little OT. I stayed silent while they said how “you know I love success stories like ours” and how difficult it is to deal with the fact that their children will always be smaller because of their experiences as preemies for a few weeks. I listened and scrolled through my phone until one of them turned to me, as I was not participating in the conversation to say “you can’t even imagine how bad it was…watching your kid attached to machines…all those bells and whistles…no one could EVER understand how hard that was…”  and I smiled as to agree and walked outside quietly for some air. Fortunately, I had been texting a fellow mtm mom who I know understands completely and she made me laugh as I thought how ironic it was for that woman to say that to me. These women were laughing and gasping at the thought that there were babies on ventilators with feeding tubes while I have those machines and more currently attached to my son or in his room.

Look, I don’t doubt that their experiences were tough. Seeing your child going through anything with health concerns is horrible. One day or 120 days (+ 14 days at rehab) or 3 years would still suck. However, I can’t help but laugh. Maybe it was the arrogance, maybe it was the ignorance…but to say that no one understands. You’re right…I wish I could understand at only your level. The same way that I am sure there are parents that have had worse experiences than me…there are some parents that would give anything to have what I have right now. I know that for sure. So, no, I don’t expect anyone to understand what I’m feeling and you’re right, no one understands what you’re feeling either. I know most can’t unless they are in the exact same situation and even then…they understand it differently. However, I also feel like I am at a level where I don’t even need to add into that type of conversation. Part of me knows that while that was an opportunity to educate, it most likely would have made all involved uncomfortable and a awkward silence would have ensued afterwards.

All that being said, my message of the day to everyone is think before you speak. There are people who have it worse and people who have it better…you’re surrounded with other humans and you have no idea what they are dealing with. Your experience isn’t the best or the worst. Be humble and make the most out of your blessings. 

It’s just really hard.

I’m doing everything right. I couldn’t do more than I am. It’s still really hard. My therapist is away for 2 weeks and I’m feeling all sorts of things. It’s been a rough week. So much to write but no energy. Just wanted to post to remind myself that it’s going to be ok. We’ve made it through 100% of the hard times, so that’s a pretty good track record.

4th of July fun & a visit to the GI…

I like the quote above. 🇺🇸

Courage, imagination and determination also can explain how we accomplished going to a family BBQ in NJ (Brenden’s first big outing)! It took a lot of planning & courage, but we did it. We brought 2 suction machines (after the one failed the other day, I got replacements with car chargers), his vent (of course), two oxygen tanks (although we didn’t use either 🙌🏼), his respiratory “go bag”, pulse ox with back up batteries, a surge protector and extension cords, regular diaper bag stuff, feeding stuff, a play yard, stroller, portable fan, change of clothes for both kids, snacks and toys…and probably more stuff that I can’t remember right now, including dessert (because you never go to a party empty handed). We had one of Brenden’s great nurses again, too (the same one that was with me for a few adventures last week). Our cousins were incredibly accommodating in allowing us to kind of taking over a part of the yard to set up everything, & it definitely worked out!

The kids had an amazing time! Brenden got to meet a lot of family he had never seen before, which was wonderful. He was so happy to be outside and did so much better than I expected (not that there’d be a reason not to…but this was literally his first time just hanging out outdoors!). One cousin came over and asked me to explain what all the machines do. It meant a lot to me that Brenden’s family showed so much interest and support when seeing him in person. While Facebook messages are nice…the past year has been quite isolating. It’s not that I expected anyone to NOT be excited to see him…it’s just that my norm is that it’s truly just us, therapists and nurses in his life. It’s surreal to see him interacting with so many others. Not sure if that makes any sense.

Anyway, while everyone ooh’ed and ahh’ed in shock about how far Brenden has come from what they heard he started with…Juliana was simply loving spending time with her cousins. I love hearing her laugh so much!

(Good times with family…especially pulling big sister’s hair lol 🤦🏻‍♀️)

Both kids were fast asleep in the car on the way home!

The next day, I had to take Brenden to a GI appointment. The nurse that came with us is very nice, means well…but a bit inexperienced with home care. She’s young and wants to do well. While she has the skill set to a point, she hasn’t been out with a trached kid before…like she works in a doctors office and normally deals with the average kid…so I think she often thinks of Brenden as a different kind of kid which can sometimes be an issue. Let me explain…

We were on our way to the city. Brenden started to get car sick. The nurse held a blanket in front of his mouth to catch vomit. Now, for another kid…that might work. For Brenden, no. You need to grab a suction machine and suck that shit out ASAP. I can not stress the ASAP part enough. So, I’m about to get into the tunnel and I turn around and see this. I yell back to suction him. She jumps to do it, but in this 2-3 second lapse, he starts to desat. His O2 goes from 98 to 79. Why? Because he has vomit in his mouth and can’t breathe (yes I know he has a trach but it doesn’t always work for him that way)…also, he’s crying which doesn’t help (think about how your breathing changes when you cry)…plus, we have to be very careful about God forbid aspiration (getting fluid into his lungs). So while she’s suctioning him, I slow my car to stop (at the opening of the tunnel- right now, I don’t give a fuck that I’m blocking NYC traffic)…and I had kept the oxygen tank next to me and flipped it on to give him extra support. In my head, I was giving the nurse literally 2 seconds to fix him or else I was jumping into the back seat. I once saw a nurse falter and he went from 100% oxygen to 79 to 69 (turning blue), so I’m not one to play after that…and in 2 seconds Brenden came back up to 88….93….95…99. I looked back and saw Brenden was stable as I continued to tell the nurse what to do in this situation. I also told Brenden what to do (“take big breaths, baby…calm down…you’re ok, it’s no big deal…I love you, you’re ok…” etc). He started to play with a toy. I left the oxygen on for the remainder of the ride…basically driving the rest of the way with eyes behind my head.

I called the doctor to say we might be late. The secretary reminded me that it’s important to be on time and I say “well, I have a trached/vented kid…nothing usually goes the way I plan…sorry”…

When we got to the hospital for the appointment, I jumped into the back to check him again. He was ok…although smelling a bit like vomit. I cleaned him up a bit more thoroughly than he was and got him ready to get out. It takes about 15 minutes to get in/out of the car when you consider setting up his stroller, fixing his wires, setting his vent up on the stroller, grabbing all the bags, having to carry him in/out on my knees through the minivan, etc.

At Columbia, you have to go through security and there was a line. Even though I arrived on time, the process from car to office took an extra 20 minutes. When we get to the front desk, I’m told that I lost the appointment because I am 20 minutes late. I argue that I called and there’s no way in hell I am leaving without my son being seen. The secretary points me to the waiting room. It was very peopley and there was a kid getting violently ill. So I went back to the desk and said that we will wait but can we please go into a room to lay down because Brenden is struggling with oxygen after getting sick in the car (half true…by this point, he was very stable and I had turned off the oxygen, but I need to protect him from germs in the waiting room!)…so we get brought into a room. It’s 11:30am now…

I plug all his machines in so we can, at the very least, get a good charge while we wait. The nurse plays with Brenden while I review my list of questions. I don’t plan on coming back up to Columbia for a while so I want to make sure I ask everything I need to. I also make sure that his blood test results from last week were sent over.

At 12:45, the doctor comes in, apologizing for the wait and saying they would never cancel an appointment on me. Nice right…I can’t be 20 minutes late, but they made us wait an hour and 15 minutes. Lol

To sum up a very long appointment that followed…some of his bloodwork was a tiny bit high (some liver numbers, iron & magnesium), but at this point we don’t need to do anything about them. His vitamin D is perfect and we were given the option to stop it (it’s his ONLY real medication besides eye drops), but I opted to continue based on many things. Also, we are making major changes to his feedings to add more blended food/water and change times…& getting rid of the Farrell bag (prayers that it works out!). It was amazing…the doctor was calculating fluid needs to his height by centimeter and figuring out that numbers I guesstimated were actually the exact numbers needed. Lol Like I’ve been guessing at a lot of things (how much baby food to give him through gtube, how much water, etc) and the calculations were spot on. Yaaaaas. Haha The only thing is that Brenden is off the charts for height at 36 1/2 inches, but low on the weight at 22.8lbs so we are trying to bring up the weight a little (not too much because we don’t want to send things in the opposite direction, of course). For a child on a vent, it’s better to not be heavy (not skinny either) because of the effort it takes for him to breathe as it is.

(Brenden at the GI…By the way, if you were wondering…we finally got the image reviewed from Brenden’s chest X-ray. The pulmonologist sent me an email. It looks the same, but not much atelectasis so it might just be a case of it is what it is at this point. As you can see, he’s very stable – oxygen is 100%…)

Anyway, on the way home, the nurse starts telling me how in nursing school, she was taught to have a poker face when dealing with medical situations and how nurses need to be the stable ones emotionally (no matter how scared they are). The family of the patient is usually the emotional one, obviously, so a nurse has to maintain the calmness. She then remarked at how I always seem to have a poker face when things happen with Brenden. I explained that it’s a survival thing. When it comes to my kids, I am very straight forward and focused in an emergency. It doesn’t mean that I don’t have emotions…it just means that I know on an instinctual level that my emotions will only get in the way. They are balled up somewhere between my heart and my back…through my shoulders. I focus on the task at hand…and then later, when everyone is safe and I’m alone, I let them out (& cry).

Like yesterday…remember when I wrote about Juliana’s fall in the park? Mike and I took her to the park again yesterday. It’s the first time we’ve been back. I didn’t really want to go because it looked like it was going to rain, but it was only partly cloudy so I agreed to give it a shot (the park is across the street from our house). Juliana played a bit. Then, the sky became more overcast, it started to drizzle and we heard thunder…Mike was chasing Juliana through play houses and then in the grass playfully as he was trying to get her so we could go. Suddenly, I had a moment to myself & started to think…it went something like this…

“Was that thunder? What if there was lighting…?! They are on this playhouse that has metal parts…great, and now they are out in an open field! We need to leave now…this can be dangerous! That nurse told me that story about a kid who got hit with lightning through a car window. I thought cars kept you safe and grounded. Here we are though, the only shmucks left in this park. Ughhhhh let’s go! Why is she running? What if she falls again? She can’t get hurt again. I know she wants to stay but why can’t she be rational. Because she’s 3, I know. Why is he taking so long to get her? Why am I not helping him and just standing here? My back hurts. Her poor skin is just healing from her fall. Brenden’s skin is so sensitive too. It’s so easy to tell if a nurse doesn’t keep him clean because his skin gets so irritated so quickly. Was that thunder again? What if there’s a bad storm now….Mike needs to catch Juliana already so we can go home, be safe and check on Brenden. Let me call out to them “Let’s go home NOW!” (I do.) I hate not being right next to Brenden & Juliana all the time. Like when Juliana fell, I was too far. Like in the car, when Brenden puked. I have to rely on other people sometimes and I hate it. I hate that I can’t drive AND be his nurse. That desat to 79% scared me. He went from 100% to 79% to 69% at Juliana’s birthday party and turned blue and no one else saw but me & the nurse. The nurse that day (who no longer works for us) stood in my way of the suction machine, moving too slow….But then he came back. I got him back. Like, when he turned blue in the NICU… when I was holding him…when he got chylothorax…his face, his face is blue…she took him from my arms…4 nurses ran over and they are bagging him…they are counting…his face is still blue, now pale, now pink, now white…I can hear the machine’s alarms going off…God please…my baby…”

…and I realized I was sweating, hyperventilating and tears were falling. Finally, Juliana came back towards me with Mike. I wiped my face, took a deep breath, put back on my poker face and made some sort of statement about us needing to go home…lifted Juliana like a surfboard and started back towards the park entrance so we could go home. Mike saw through my poker face…but I don’t think Juliana did and that’s all that matters.

Summertime is always the best of what might be…

So it’s been awhile…thought maybe it was time for a little update! Brenden is now 15 months old! It has been a crazy few months… 🙃

After my last post, I was injured at work by a student. A computer chair was thrown and hit me in the back😭, causing a pretty painful back injury. I needed physical therapy 2-3 times a week and lots of rest. Not an easy thing to do with 2 kids…especially when you have a medically complex baby…but I tried my best to take care of me while taking care of everything else. 😐

Brenden has been showing a lot of progress. While he is still unable to sit up, he is incredibly strong in comparison to how he started. 💪🏼He’s talking a bunch, tasting foods by mouth, super happy, rolling side to side and putting his feet in his mouth. If you know me personally, I’ve probably shown you the video where he says he loves me 😍 (he says “e-la-la” and smiles repeatedly in response to me saying “I la-la-la-love you”). He can say lots of big words (purple, oval, iPad, Mama, Dada, Ana, etc) but only does so when he feels like it. He can sit up if you prop him against something but he still has very poor head control. He can, however, sit in a regular high chair for up to 2 hours eating/doing therapies…which is a big deal. He has begun to show more and more personality too…always making everyone smile. 😍 He is a very funny kid and likes detaching his tubes, hiding things on nurses, taking my glasses off my face and sticking his feet in my face so I can smell them and joke “peeeyew!!” 🤣 He is very opinionated, like his sister…he HATES mangos, but loves banana, apple, sweet potato and green peas, among some other foods. He expresses his feelings about songs and activities…he adores his sister, and she still loves him so much too! 💖

Juliana has been doing amazing too! She finished her first year (well, 1/2 year) of nursery school. She knows all of her letters, letter sounds and can count to 100. She even knows some Spanish and French! She has been thoroughly enjoying her role as big sister, but often still wants to be reminded that she’s Mommy’s baby also (& loves hearing the story about when she was born). It’s amazing how this little girl has become such a person and my lil bestie. 💖

————————————————————>

Around here, in our little apartment ICU, things have been looking up from a managerial standpoint. Nursing has been a lot better. We have a great team now that truly cares about Brenden. One benefit from being home on my injury for a bit was the ability to see what was working/not working nursing wise and help to fix it (hiring people, changing scheduling, etc). I pray that we keep all of these ladies as long as possible because it’s amazing what sleep can do for us parents! Lol I still have to micromanage to an extent and emergencies still arise, but it’s all manageable lately. I’m almost afraid to be writing this paragraph (superstitiously!)…but Brenden’s nurses now truly care about him for the most part and that’s what matters.

Anyway…on to more medical stuff…

We had gone to the neuromuscular clinic at Columbia University in March. I told the doctor I was concerned because Brenden was becoming “pigeon chested” and I wanted to check on his spine. The doctor responded that “well, kids with neuromuscular diseases have abnormalities and deformities” and brushed it off because it wasn’t “bothering” Brenden. 🤬 I demanded an X-ray. Due to my back injury that happened right after, I waited until April 29th to take Brenden for the X-ray. Long story short, over the next 4 weeks I stalked the neuromuscular doctors office trying to find out the results. The doctor would not return my calls or emails. I even spoke with his secretary who confirmed that he had the results and would call me right back. He didn’t. Ever. 😡 I wasn’t super concerned…because during this time, I had spoken to his PT and OT…and Mike came up with some ideas positionally…and the next thing you know, we wound up fixing the pigeon chestedness on our own. Brenden was doing great. He was happy as ever…getting stronger, talking more…and we even started sprinting him (taking him off the vent for short bursts of time…inching our way from a few seconds to a few minutes)…

However, I still wanted the X-ray…

So at the END OF MAY (!!) I call his pediatrician. He had seen my numerous emails to the neuromuscular doc & all the non-responses because I cc him on everything. He says “give me 10 minutes”. 8 minutes later I get a text with the results and my phone is ringing. The doctor is very upset, as was I…because while Brenden’s chest had no issues…and his back was fine (only positional kyphosis)…it picked up retrocardial lower left lobe atelectasis with infiltrates (aka partial lung collapse with possibly pneumonia). He was like “what are his sats now??” and I told him he had been between 98-100% oxygen for weeks and his heart rate was perfect. We were both puzzled and upset. Why didn’t the Neuro doc give me these results?? What if I didn’t demand this X-ray?! I call the pulmonologist in a panic…he tries to compare these images to old images from his hospitalization in September and we come up with a respiratory care plan (meds, changes in vent settings, changes in cough assist) to try to reinflate the lung. Mind you….waiting for this guy to compare images…coming up with a new protocol, and getting our DME to set up machines (because while I can do it- I need official orders because of my nurses- I need to protect Brenden’s well being as well as his nurses licenses – because when there was once a question about vent settings in the past it caused a major problem)…yeah that all took TWO FUCKING WEEKS. While I waited for him those two weeks, our pediatrician and I came up with a plan that we started in the interim….

Then, we start the meds for Brenden. He has an awful reaction to albuterol and is like…bugging out. The kid didn’t nap for days and was seriously high (holding his feet to his face, shaking them, yelling/laughing at the top of his lungs, heart rate pretty high at 9pm after being wide awake since 5am!)…so after a few days, pediatrician and I cut the dose in half…and after 2 weeks stopped giving it to him.

During this time, I went back to work after my injury. I had to move classrooms (I’ll be teaching 2/3/4 next year instead of K/1 and couldn’t be happier) which was quite a struggle considering I have to be careful with lifting and such. My coworkers helped as much as they could. I just felt like my blood pressure was higher at work because I was so nervous about getting hurt again. School ended on Wednesday.

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((So now for a break down of what we’ve done play by play in the past week…in case you were ever curious about what a “day in the life of us” is like…here’s a week in the life…))

Thursday: Brenden got a new adaptive stroller…but the head rest is wrong and I’m still waiting for a custom one. Right after it was delivered, we took it to go to the hospital for a re-X-ray. One of Brenden’s nurses that I love was with me and I swear we were like Lucy and Ethel trying to drive this damn stroller…it has so many features it’s confusing. The damn base started to spin at one point while we walked through the lobby at Methodist causing me to lose control because I had to reach to grab Brenden’s head because the headrest (although he has a neck brace and pillows for now) is not right….which caused me to clip a man in a wheelchair. 🤦🏻‍♀️ He gave me the look of death immediately and I yelped “Sorry!”…and I saw his face change to a softer look when he took a glimpse at Brenden. 😬 Anyway, the X-ray went well and we even got the disc this time so that there would be no problem in finding out the results. Juliana was upset that she stayed home with Mema while we went and begs me to bring her to the next doctor appointment.

Friday: We go to the pediatrician for bloodwork and vaccines at 8am. I brought Juliana, my mom and a different nurse I like. It took me 25 mins to get from the car into the office because the damn new stroller is so heavy and ridiculous to manage. It was madness because Juliana had some idea that the pediatrician (who she loves/hates) was going to take her blood (the bloodwork was needed for Brenden) and was screaming/crying at the top of her lungs. Another child in the waiting room also started crying. I was on the phone trying to get our GI, who was supposed to send the pediatrician a list of bloodwork he needed so we could do this one time. I was holding Brenden and the nurse ran to try to help my mom with Juliana. Finally, I get through to the GI and then get the nurse to watch Brenden & run to help my mom calm Juliana down. I bring Juliana back in the room & Brenden was happily playing on the exam table.

The nurse comes in to do the milestone checklist. “He doesn’t talk, right?” Brenden looks up, raises his little hand to wave and says “hi!”…check! ✔️ lol He actually did amazing on the cognitive parts of the checklist…it’s obviously the gross motor stuff that he struggles with.

The pediatrician comes in next & give us the results of the X-ray from the day before, that said “questionable retrocardial lower left lobe atelectasis in comparison to images from 4/29” and he asked me to bring the images to the pulmonologist at our upcoming neuro clinic appointment on Tuesday, as he couldn’t read the disc. He walks out to get the blood vials and vaccines for Brenden.

2 nurses come in and are like “OK! So we’re gonna hold the baby for you and take his blood from his arm” and Brenden’s nurse was like “NO you are not holding him”😂….I explained that they probably won’t be able to get blood from his arms and should go for his ankles. They ran out of the room as if it was on fire…the doc comes back rolling up his sleeves like “wow, I haven’t done this in 15 years”… 😳 but proceeded to get blood from both ankles while I stuck my face as close as possible to Brenden’s to try to distract/calm him. I hate seeing him cry because he’s usually so happy! Plus, I hate watching them draw blood…it reminds me of when he was hospitalized and the ER struggled to find a vein so much that they turned his little arm purple with a tourniquet before switching to his ankle (leaving his arm bruised for days 😥).

Thankfully, the doctor was quick with the bloodwork. A vaccine in the thigh later we were done. Juliana got a lollipop for hanging out and we got ready to leave. We passed a lady and her daughter on the way out…the lady gawked at Brenden and I said “you know it’s not polite to stare? You’ve never seen a cute baby before??” and walked out feeling a bit aggravated.

We got home after 11 and Brenden missed most of his therapies that day. Juliana was supposed to have a play date at 11 at the library, but I cancelled. I was already done for the day.

Saturday: We rested. Hung around the house (aka our safe space) and did household chores. The kids played and watched Frozen.

Sunday: Mike was home from work so we took a family walk around the neighborhood with the stroller and it seemed to manage better. I started to work out the kinks…figuring out why the base spun on me that day. It was kinda nice.

Monday: Brenden had his therapies so I took Juliana to the park. We had a great time playing in the water, on the swings and in the play houses. She met a little girl named Ava and the two of them were having a blast. Ava’s mom was very nice and we were chatting while the girls ran in the sprinklers…until Juliana fell. Of course, she inherited my grace and balance and has delicate skin. She wound up with two scraped knees, a scraped thigh, scraped arm, cut up elbow and cut up ankle. 😰 I carried her home, both of us covered in blood, cleaned her up and she was more upset about leaving her new friend than anything else. She’s amazing and wanted to go back to find Ava again. I said ok, although I really wanted to wrap her in bubble wrap and stay home til she’s 25. 😰 My normal hyper vigilance/ptsd set my adrenaline into overdrive and my heart was racing all day afterwards. We all fell asleep early.

Tuesday: Brenden had an appointment at the neuromuscular clinic again. I tried to jam in all of the therapies early so he wouldn’t miss anything again. I begged everyone to be on time but of course, one was late (which sets off a spiral of the other therapists being late) and got mad at us for calling him out on it. Brenden has some amazing therapists but sometimes they don’t realize how their services are so time sensitive – maybe before a feed or after a feed – or if they run late it sets off the nurses schedule…it’s just so frustrating. 😫

Finally, my mom comes to watch Juliana & we get ready to leave…& Brenden is not happy. He had been napping and woke up when I put him in the stroller. He’s sobbing because he wants to go back to bed and setting off his machines because he does this super cute thing where HE HOLDS HIS BREATH when he’s mad. 😰 35 minutes later of suctioning and calming him down, we get to the car. The damn stroller is so heavy, I break my back trying to get it into the trunk. I’m with the same nurse as the X-ray appointment so I know he’s in good hands in the back and we are off. Of course, we hit traffic so I call the doc to say we’ll be like 20 mins late. I see Brenden in the backseat trying to curl over to one side to go back to sleep…😴

When we get to Columbia (which might as well be in Guam in comparison to where we live), Mike meets us outside. We go to the valet which has a long line….when it’s our turn, we basically block traffic trying to get Brenden out of the minivan because they have us pull over to the side opposite of where he is…all the cars are beeping while we’re getting him out. I suddenly get a call from the clinic saying they want to cancel my appointment because I’m 30 minutes late. I tell them I’m outside and there’s no way they are cancelling on me (add in a few expletives).

We drive the damn, heavy, clunky stroller that I now hate to the door with Mike running alongside holding Brenden’s head because he’s so tired already that he’s not holding his head up at all. We have to go over 2 high curbs and run across traffic to cross the street because the corner is like a block away (it’s a very very very long street).

We get in and they secretary kind of rolls her eyes when she realizes how late we are. She tells us to wait in the very crowded waiting room where people are coughing. I mentally note that EVERY OTHER DOC OFFICE is super understanding and accommodating except this one. 😑 So, I go over to Brenden and see he’s uncomfortable…I call out to the secretary and say “I’m sorry to bother you, but is there somewhere we can go to lay down while we wait because Brenden is struggling to breathe”…when in actuality he was just cranky and the waiting room was too peopley. A minute later, we’re in a room…Brenden’s laying down and totally happy.

The docs come in one by one to see him…no real apology from the neuromuscular as to why he never told me the results of that X-ray except complaining that his secretaries don’t give him messages (although I emailed him 🙄)…pulmonologist says he can’t open the discs so he’s going to copy the files and send them to radiology (“I’ll be right back with your discs”), that we can start using a passy muir and step up the sprinting. Great! The brace guy comes and tells me Brenden outgrew his chest brace so we need to come back next week for a new mold (omggg do I have to come back?! We already have a GI appt this Friday up here in Guam…😩). By this time, Mike left to go back to work…we get ready to go and go out into the front of the office. It’s like a ghost town. Turns out the doc left for the day and forgot to give me back the disc.😣

So we start off to go back to the car. Mike noticed a bridge connecting this building with the main hospital across the street (where the car was parked) and suggested I try it instead of crossing the street dangerously. The nurse and I go off to find out way. We wind up passing through the staff cafeteria and for a moment my heart starts beating irregularly because it went from being deserted to very…peopley. 🙈 We find the elevator, go down to the main floor…past security…to the valet. I reach into my pocket and I realize I lost the parking ticket. Ffffff! Brenden, who has been ok until now starts crying because he’s hungry, hot and tired. His heart rate (normally in the 120’s-130’s) is now 180’s-190’s and his oxygen is going down because of the holding his breath trick. 😰We turn on oxygen support. The nurse and I are trying to calm him with Bubble Guppies on my phone while I search for the ticket because I’m being told I’m going to have to pay extra for the lost ticket and don’t know what time I came in. I finally say “whatever just get me the car I don’t care how much it costs” and a valet guy comes over like an angel, saying “hey I remember them! They came at 3:45pm and blocked traffic with their minivan! I’ll get their car!” So he runs off to get the car (which took about 20 mins), I only get charged $29 (cheap for Manhattan standards) and when the car comes, I put Brenden on the floor of the minivan. He immediately calms down. He had a wet diaper. He is hungry but we don’t want to start the feed until he’s settled.

The nurse changes him while I fight with the godforsaken stroller that I’m about to leave in Manhattan & shove it in the trunk. We set Brenden up in his seat with his little yellow tambourine (his favorite toy right now), which he bangs happily as the nurse starts his feed. He’s definitely hungry because his feed was an hour late. The nurse and I hate the idea of driving and feeding, but we will be stuck in Manhattan rush hour traffic so we won’t be moving fast. I order a pizza to my house. I start to drive. We call the night nurse to let her know we are running late.

The nurse and I are laughing and chatting as I pull off the highway a few blocks from home. Brenden coughs and vomits mucous all over himself/the car. 🤮 The nurse reaches for the suction machine…I pull over and jump in the back seat. The suction machine isn’t making the right sounds and isn’t suctioning strong enough. The nurse and I keep working although I know we were both secretly panicking. We clear his airway and the machine suddenly gets a second wind and works. We check to make sure he didn’t aspirate. He’s ok. 😅 We decide to not feed him anymore til later. I jump back into the front street and drive home. My mom calls to tell me the night nurse arrived and will meet us outside.

We double park outside because…well, we live in Bay Ridge. 🚗🚙🚐🚛🛵Brenden has just fallen asleep and now is pissed off again because why are we bothering him again! So we get him out of the car…his feeding somehow spills all over me and him…plus the vomit transfer from his clothes to mine…and I leave the car in the street because I’m so panicked about the suction machine not working right…we run up to the apartment…Bailey 🐶 hears us coming and is so excited he almost took out the nightnurse jumping up to greet us. We get Brenden out and settled…he has the biggest smile of “OH THANK GOD THAT’S OVER!”…my mom is eating dinner with Juliana…Juliana quietly asks “is everything ok??” I assure her we’re all good. I grab a piece of pizza and pass one to the day nurse since neither of us have eaten since breakfast…we run outside so I can take her parking spot before she leaves (she has to run to pick up her son and now she’s late). We have a quick hug in the parking lot and she hands me some chocolate from her purse and tells me I’m a super mom as I thank her repeatedly for everything.

I park, run back upstairs, sit down to finish my pizza and start crying silently. 🥺 My mom looks over and tries to console me 💗 when Juliana comes over, jumps in my lap and informs me that she has to pee and she needs me to accompany her. Lol No time for emotions.

Later on, I got emotional again and Mike basically said all the right things because he’s the only one that can. ❤️ He said no one can do all the things I do and that the kids are doing so great, thanks to me. I know I’m a grown up and don’t need my back patted… I don’t need to hear what a good job I do…but sometimes I think that’s exactly what I need…and hearing that from him meant so much. He does so much for our kids too, and we truly do make an amazing team. We are blessed, we are so blessed…🙌🏼🙏🏼

Today: I’ve written this today during physical therapy and every few moments I’ve had to myself…only took ALL day even though I’m using talk to text! Lol I’ve been up since 6am…my mom came to watch Juliana so I could finally work on me a little (haven’t been to physical therapy in 2 weeks since I returned to work)…and my PT noticed my hips were off and beat me back into shape so I’m sore but happy. Just still feeling the after effects of adrenaline/hyper vigilance…feeling very jumpy. Still haven’t heard from pulmonologist about the X-ray so here’s hoping it’s fine? 🙏🏼 However, I did hear from pediatrician today who said his bloodwork was great. 🙏🏼🙌🏼❤️

Juliana told me (with one little hand in the air) that she’s going to cook brunch for Brenden and me. Brenden was finished with therapies and with Juliana playing on the floor. She drew him a million pictures and then covered him with all the papers lol. She set up brunch in her play kitchen and just laid down for a nap…he’s napping too…so here we are…

Just kidding, the DME just came to replace our suction machine, bring me a new car charger, check/replace oxygen tanks and then the OT came and we spent an hour propping Brenden up & fixing the stroller…because tomorrow we’re supposed to go to a BBQ 2 HOURS AWAY IN NJ!! 😱 It’s summertime, so I need to try to get these kids out as much as possible (despite my increasing want to stay in bed under the covers)…

So…stay tuned for more adventures from this Medical Mommy! 🦸🏻‍♀️

What a difference a year makes!

A year ago on March 31st, we were house hunting in LI. I didn’t feel well, but thought it was just anxiety. I knew something was weird, but wanted to believe that everything was ok because all the doctors and everyone in my life said that my feeling like I’m drowning in water or breathless was just “being pregnant”. I didn’t feel this way before with Juliana, but wanted them all to be right.

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That night, it was Passover. I had wanted to cook for your daddy, Juliana, Mema and myself but I just didn’t have the energy. We went to a diner. We laughed because your sister repeatedly said “baby cakes” after Mema said it. I couldn’t eat much and again felt a bit breathless. I went to the bathroom and saw the tinyiest spot. I knew in my heart that you needed me to go to the hospital. 

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This was different from the last time. With Juliana, I was in labor all day, sure that I was fine. I went to work, my mucous plug fell out and I made the students clean the classroom, insisting to everybody that I was fine! All my friends at work told me I was in labor, but I assured them I wasn’t. They said my belly dropped, but I refused to panic. I went home, walked Bailey twice, and stood in the living room chatting with a contractor while my water broke all over the floor. I still showered, shaved, and calmly waited for Mema to come…I met your daddy at the hospital and strolled in to Labor & Delivery calmly like “Hey…so, I think I’m in labor”, as the water was still rushing down my legs an hour and a half later. They didn’t believe me. They said I must have peed in my pants. Lol As soon as they went to check though…“omg, that’s amneotic fluid”….”your contractions are two minutes apart”….”you are not dilated enough…we need to get the baby…” “how are you not in pain?!” as I laughed and laughed…and 2 hours later,  your sister was born. She cried a beautiful cry that stopped my whole world…

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This was different from the last time.

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That night, one year ago, I drove to the ER. Your dad wanted to drive and I wouldn’t let him. I watched the gigantic moon hanging over the buildings as we crossed the Brooklyn Bridge. I tried so hard to remain in control as I did when I went into labor with your sister…but this time, I was scared. I thought something was wrong with me. Between the two of you, we had lost a baby very early on and I blamed my body…my fear was something was wrong with me and causing you to be uncomfortable. I was trying to swallow my panic. I needed to drive so I could be in control…I would get you to the hospital and they would make you safe.

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At the hospital they checked me. They thought I was dehydrated and pumped me with fluids. Daddy and I discussed that we would be late to Easter at Auntie Lisa’s house tomorrow…and I laughed that I could be home watching The Ten Commandments instead. I joked about the moon rising the water in my belly dramatically in that movie…parting the amneotic sea for you…with the theme music playing loudly in my mind…

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They wanted to send us home. We started to get ready and when they went to remove the probes from my belly, your heart rate dropped so we stayed more. This scenario happened 3 more times. Finally, I started to feel a sudden increase of pressure and intensity. Are these contractions? I couldn’t breathe again. I got dizzy. I didn’t say anything to anyone…I didn’t have the chance to… but the machines knew it. A group of doctors and nurses rushed in, put oxygen over my face, turned me to my side and gave me a shot in my leg. I kept telling myself and you that we were ok, but I knew I was losing control of my position as your protector.

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Your daddy and I went over names. We had a few left…James Bernard, Brenden and Matthew. James Bernard was it, we decided. The doctor came in and decided to take us to the OR. Then he changed his mind. Let’s see one more time if we can wait this out. “Oh thank God” your father said, “I don’t want to name him James”. That left us with Brenden (B after my Daddy) and Matthew (M for your daddy/in memory of my friend Michelle/it’s just a strong name we both loved). Brenden Matthew will be his name!

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The doctor finally decided it was go time. He said you would be born at about 9am (the doctor actually was exactly right with this plan). This didn’t feel as light as the first time. I laid down on the operating table after getting a spinal and waited for your daddy. Everyone seemed relaxed…this would be routine…but I was worried. We talked as they started the procedure. The same feeling of freezing cold entered my nervous system, as it did with your sister, so it oddly calmed me down. I knew how it was supposed to go. I get cold, I feel pressure, I wait a few minutes then I will hear a baby cry. The doctors were going to get you out and save you before my body could hurt you. 

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 I look up and see the anesthesiologists face. I asked him, “is everything ok?” He said “Yes, everything is ok don’t you worry”, but his face told me a different story. He looked suddenly, blank. He patted my arm a bit. We heard them say there was so much water…it was overflowing and rushing past your father’s feet, I would later find out. There was counting…for me it was off in a distance as I think I still tried to will everything to be ok. I was sure it was me…I was dying maybe…but I stayed quiet because I just knew if they got you out safely, it would all be ok…

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I think I asked your daddy to talk to me about a vacation we went on to Aruba, but I’m not sure…

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Suddenly a doctor walks over to see us. I knew immediately something was wrong because this didn’t happen last time. Where is the baby? She said “Your son was born 15 minutes ago. He wasn’t responsive and was completely floppy. We needed to intubate him and we need to take him right now…” and I’m not sure what else she said because the wave of emptiness and despair came over me. I lost my son? Another doctor said “do you want to see him?” and they pulled back the divider curtain…and there you were…the back of your jet black head of hair…one arm hanging off the table that they lifted back on to it…I couldn’t see your face…is he breathing? Is he….is he…? “Dad, take a picture for Mom”…your Daddy took your first picture and looked back at me as if he had seen a ghost…everyone was rushing and I was stuck on the table paralyzed. I wasn’t dying like I had thought but were you?! ”Follow the baby” I think I said & he handed me the phone and ran out after you. I looked at your picture and saw my beautiful son…but I didn’t know what I was seeing. You weren’t crying…were you awake? The silence in the room was deafening although the doctors talked around me about going to Chicago…as if nothing happened…I sobbed deeper than I have ever cried and looked at your picture and asked “did he die?” The nurse said “they took him to the NICU”…she didn’t answer my question…that’s not an answer!!…they rolled me from side to side to clean me up…I caught a glimpse of the floor and all I can see is blood and water everywhere…they put down sheets so they wouldn’t slip…

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The last time, when the baby came out the room exploded in congratulations and “welcome to the world, Juliana Caroline!”…they placed your sister in my arms and I couldn’t believe that I could just hold my own baby that I made! They wheeled me to recovery where she did the baby breast crawl and immediately started nursing on her own. It was magical and overwhelming!

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This time, as I was wheeled out, a nurse asked me “what is his name?” “Brenden Matthew” I whispered. “That’s a nice name”, she said. No congratulations. No baby to hold. They wheeled me to recovery. I heard a baby cry across the room and my heart sank deeper because I knew it wasn’t you. I laid there texting with your daddy to find out where you were. He couldn’t get in the room, no one knew what was happening. The doctors came to talk to us and even they were crying. No one knew what went wrong. I was being tested for a million things, it seemed. Your daddy said you were ok many times… but I really believed you were gone. I believed I failed you and saw visions of the plot where your daddy’s family are buried. Your first picture reminded me of what my own father looked like when he had passed away. I thought they were all lying to me and I was confused and broken. Your Daddy had text me while he was with you that when he finally had a moment with you after you were born, he had asked you to open your eyes and you did…but for some reason it didn’t register with me as a positive thing (which it obviously was). I couldn’t think straight. I went to a dark place in my mind that can only be explained as the depths of hell.

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Hours passed. 

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Then, your daddy told me that they would be bringing you to me. You were being transferred to another hospital and the paramedics would bring you to see me. Your Uncle Frankie was with us at this point next to me, as I saw your daddy walking proudly towards me with 2 men wheeling in a isolette (although I didn’t know that word at the time). One of the men saw my face and reached out to me, and I reached out to him….he lifted me up so I could see you (in retrospect, not the best idea after having your abdomen cut open). The box was like a treasure chest and there you were…my little treasure…my golden piece! You looked like a tiny sleeping doll. I called your name probably way too loud and your eyes opened and looked into mine! “You’re alive!?” I gasped. It was like life had escaped me in that OR…when you were born and struggling, I think a part of me died so that you could live…and then there you were, bringing me back to life. Your daddy assured me that you were going to be ok. He said you just needed to get help at Cornell where they could do more for you. He wouldn’t leave your side and would stay with you until I got there too. I was truly shocked back into living and overcome with joy. I kissed you goodbye through the air and laid back down. I felt pain in my middle, but was invincible. My son had lived! My son was still here!! The nurses said it was an Easter miracle…one nurse cried and prayed with me saying she never saw someone come back to life and that seeing me before and after was like a resurrection. 

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The next 120 days + 14 more were intense. We lived for your survival each day…back and forth to the hospital to you…back and forth to home for Juliana.  It was true, my body did cause this…I was the carrier…but your Daddy and I decided that our job was to commit our lives to making your life better. What could we do? At first, you became so sick…I would sing Hallelujah at the top of my lungs each day as the tears fell and I prayed…later to be replaced by First Day Of My Life and even later, Fight Song…just amping me up to be all that I could be for my babies. I stayed up all night researching our disease…meeting strangers who shared this commonality who were incredibly supportive as we made multiple life altering decisions. We watched amazing people save your life in the hospital. Daddy and I learned to become one mind in order to handle our new lives as we brought you home to finally be a family 134 days later. We learned all your cares and machines inside and out. We prepared and oriented Juliana so that when she finally met you, she wasn’t even phased. Her first question was “that’s his trach?” We have fought, we have celebrated and we have truly found the most incredible love for each other in our little family. I never thought I could love your father more than the day I married him…until I saw him love you and your sister (& vice versa)…this year has brought me to a new depth of understanding about what love is…

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One year later from your birth, I can say with confidence that you are my miracle. That day, while frightening, taught me the true meaning of life! A year later, through hell and back…120 days in the NICU…14 days at rehab…through a rare disease diagnosis and other complications you slowly but surely resolved…all the ups and downs and ups…through multiple diagnoses….surgeries and hospital visits…we have seen you get through so many obstacles that they thought impossible…resolving one issue after another…through 24/7 nursing with multiple agencies needed (most have been amazing but we met a few horrible ones – we continue to ensure your BEST care!) and a ton of equipment…through us fighting for early intervention services like crazy (PT, OT, SLT, Feeding, SI, etc…) and seeing your incredible progress, through your amazing sister trying so hard to adjust to all that goes on, loving you, taking care of you, stealing your toys, you fighting back for your toys lol and big sister cuddling with you & kissing you…through it all, you and your sister have made my life so very full…so meaningful…so powerful. I can not thank God enough for allowing me to be your mother. The two of you are my reason for breathing and working so hard. I gave you both life but you both definitely gave me mine. Thank God for you both! 

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& on this day (& always) I do thank God for you, Brenden Matthew! My sweet, smart, funny, loving, strong, brave and amazing son! You have come so far and improved SO much! No one would believe it unless they saw you in real life in the NICU and now! You show me each day what life is really about and I sure do count our blessings often these days! You are Mommy & Daddy’s hero! 

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Happy 1st birthday (tomorrow) and many, many, many, many, many more!!! May God bless you with all the wonderful and amazing things that are possible…with continued good humor, good health, improved heath and success!! You will continue to thrive! You WILL continue to get stronger! I will do everything in my power to always keep you (& your sister) smiling & loving life! Never stop fighting, Brenden Matthew! I love you, my son-shine! Always and forever!

 

Your very first picture -4/1/18

A very recent picture – 3/2019

Merry Christmas

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Exhausted doesn’t even begin to describe it, but thankful beyond belief. 2 days in a row, we ventured out with both kids…both days there were huge hurdles (car sickness, a tantrum, desat, all of us having anxiety attacks, etc – many more things to add to the current Gregory family PTSD caseload lol)…but we did it!! We got one family picture with Santa in the mall, and our kids look miserable. 😂 We had 4 incredible nurses (at mostly different times) over the past 2 days helping us, and it was literally all hands on deck. Our family did everything they could to make this Christmas as easy and happy for us as possible, and gave so much love and attention to Juliana & Brenden, so we could take short breaks, to eat at the table & relax on the couch for a few minutes… and just to let us feel like human beings for once. This year was the craziest Christmas of our lives, but I wouldn’t change a thing because we were all together. ❤️ I’m feeling very emotional, but it’s so true. I hope our children always know how much their Mommy & Daddy love them and just want their good health & happiness above all in this world. I hope our family (including our new family – Brenden’s nurses) know how much we love & appreciate them. 🎁🎅🏻🤶🏼❤️🎄

Merry Christmas everyone!