Paxton’s story is lengthy with a lot to describe and explain. Bare with me as I continue to add to his story. I’ll post his story in order on blog posts, but also continue the story here so it stays all in one place as my blogs will eventually be about our daily life, what’s going on with Paxton, and maybe some ways our family is unique now.
I’d like to start by thanking everyone. Everyone has been nothing but supportive during this whole time and you all will never know how much we appreciate it! Secondly, if you have anything negative to say, just don’t. No “you should have done this”, or ” I would have done it differently”. Because we all make do with what we can at the time. I KNOW FOR A FACT every decision we have made, was the best decision for our family at that time. And thirdly, I did not make this for people to feel bad for Paxton. He is the strongest human I have ever met. He did not get this strong from people feeling bad, he got this strong through people believing in him, pushing him, and encouraging him. So if you’re going to make a comment make it encouraging, not depressing. Also, fair warning, you’r going to get the bright happy times, the rock bottom times, and some stuff I’m sure you don’t want to know or read about(sorry not sorry for the details).
I guess I should start from the beginning. Me and Josh had been together for five and a half years, and been living together for a year and a half. Then we decided we wanted to have a baby. We tried for eleven months. Then one extremely hot august day we got a positive pregnancy test. I was so excited! Finally!! I ran in to lay back down next to Josh and tossed the test at him. I couldn’t even say it!
We went to our first sonogram about a week later at a clinic. I was eight weeks and three days along and we heard the heart beat that made us melt. A few weeks later I got an appointment at my old ob office. I had only met her years before just the once and she wasn’t at this appointment either. We seen the little bean again and heard his beautiful heart beat again.
At ten weeks we had a bit of a scare with some spotting so we rushed to the hospital. Fortunately it was nothing but we did get to see him again. Bouncing up and down like crazy on the screen. Such a relief!
Right around Thanksgiving I turned twenty weeks. We wanted to know the sex of the baby before Thanksgiving so we could make the big announcement. We already had a 20 week scan scheduled at the ob office but we were so impatient we scheduled one sooner at the clinic again (no judgment). Sure enough it’s a boy! And healthy! Just like I thought! We pretended to be surprised at the twenty week ultrasound.
The twenty week appointment was the first time in my pregnancy I had met my ob. I found that very odd. I wish I would have went with a midwife like I originally wanted. But going to the ob who already had me in their system was easier. 20 weeks I was still so extremely sick. Like can’t gain weight, can’t keep down food or water, sick. But my ob office always said that he was growing well and wasn’t worried about my weight. It was the worst nausea I’ve ever felt. I denied getting any nausea medication before this point because the risk of messing up his heart. My husband and I both have heart problems in the family. I wasn’t willing to take that risk. That lasted till about twenty-eight weeks.
Then I hit thirty-two weeks and Paxton DROPPED! Contractions were no longer just a muscle cramp, they started to hurt. First trip to the hospital..after a few hours of bad cramping they went away. At thirty-four weeks I ended up back in the hospital. Contractions again, but worse. I was starting to dilate to a one. They had to give me a shot on my butt cheek to stop the contractions. The shot made me start to throw up though . .as if I hadn’t enough. so I got nausea medication and was on the way back home. No bed rest or anything..
We had put in our two weeks notice at our job we had together and moved on March 27th. It was a Monday. We moved back to my home town where we had met in middle school and had been high school sweet hearts. By that Wednesday I couldn’t breathe through the pain of my contractions. I was thirty-eight weeks at this point and man I couldn’t hold him any longer. After getting the straps and monitors on my belly to monitor his heart rate and my contractions, the nurse looks at me and says ” your not having contractions “. BULL CRAP! I had been in twice already with real contractions. I know what they feel like, I couldn’t breathe and was bawling in pain. “Take some Tylenol” she tells me. And sends me home crying in pain trying to breathe. I will never forget that nurse. The nurse who started it all. For two days this went on. Can’t sleep. Can’t walk or eat. And my BUTT! Oh my gosh my butt hurt! After walking around Wal-Mart trying to get things we need for the new house to get it done before Paxton’s grand entrance. I decided I couldn’t wait again and I needed to go back in.
Still bawling in pain, I get in. They put the monitors on my belly and say again “your not having contractions”. I told her something was wrong because I was told that two days prior and the pain isn’t going away. It was a constant pain. Not a come and go like it should be every few minutes. This had no breaks between them. She says ” let me adjust your monitor” and bam! There they are. My contractions. I had been in full-blown labor since Wednesday! My son had been stuck at my cervix for three days! They checked me and I was then dilated to a three so I was admitted. An hour later after walking and bouncing I was at a four. This was great. Now we’re moving along! It was seven pm Friday and they popped my water with their big crocheting stick. An hour later I got my epidural. And that was where my progression stopped.
Even with the epidural I was in agonizing pain! It wasn’t my contractions hurting me though..it was still my butt! (little did anyone know it was cause he was still stuck in my cervix!) All night I cried and threw up from the butt pain(I know, it sounds funny now). After two to three doses(way too much without progressing) it was finally early morning and I felt the need to push. The pain stopped when I pushed. So the nurse comes in and checks my dilation and says I’m at a ten(thank god I finally progressed!) that I can start pushing. While pushing there were a ridiculous amount of people there! Probably between 8 and 10. I don’t know if they were all doctors and nurses or who they even all were. After a few minutes of pushing (without my Dr in the room) the lady looks up and says “STOP PUSHING! You’re at a 10 but there seems to be an area of your cervix still not stretched and you can rip your cervix!” Little while went by and the exact same thing happened ?! They told me I was yet again fine to push and then stopped me in fear of my cervix ripping…
At this point Paxton’s heart rate was going way higher than it ever was at my prenatal appointments! When I asked, I was always told it was fine. I knew it was high and that’s normal, but I had no idea what was too high for an infant during birth. After all that’s what the professional is there for right? Finally the third time I was allowed to push, it was the real deal. I pushed and pushed. I was so exhausted I felt like I was watching it all in slow motion. It just wasn’t working. So she said “let’s try the vacuum, it can only pop off three times or we will have to do a c section.” (we were never told the risks it came with or even how it worked). It popped of twice and she decided to give me an episiotomy (without my knowledge or any warning). Josh’s face went white and he left the room. I could not stop laughing! (The epidural did its job there!) They had to go run and get him cause he was “going to miss the birth of his baby!” Then I pushed and pushed some more. An hour or so later of pushing Paxton finally came out! I pushed for ten minutes shy of three hours. She told me after three hours of pushing I would have to have a c section. I looked at Josh and all I could say is “I love you”. We had no idea what our future was about to hold.
As soon as Paxton came out they layed him on the baby warming bed. No cries..”it’s okay sometimes they do this” we were assured by one of the million people in there. Everyone crowded around our baby, nobody saying a word. “Do you want to hold him?” Oh good he’s okay! She lays him in my chest all bundled up. Still no cry though. After a picture was snapped by daddy J he got to hold him for a split second before they rushed him off. We got some much needed nap time after about two days of being up. Two hours or so after he was born someone came in to tell us they’re transporting him to a different hospital. He needed to be resuscitated without chest compressions (we learned this later in the doctors notes). They told us that he was a little “noodly” and they need to send him somewhere he can get better care. They brought him in for us to see him before they transferred him. They wheeled in a blue box with holes cut in the sides so I could reach in and touch him. The sight of him in that blue box is etched into my brain forever. Be was asleep, and the most beautiful thing I’ve ever seen. His skin so soft it felt like butter. At this point my family had shown up cause we called to tell them that something went wrong. Luckily my grandma and mom snapped a few pictures of me touching him. When they wheeled him away daddy J followed so he could ride with my dad, who had just pulled up, to follow the ambulance when they transferred him an hour away. I watched out the window as the brightly colored CMH ambulance pulls out of the parking lot and out of my sight and my dad’s vehicle following closely behind. It didn’t feel real. We didn’t know it was so bad. It all just felt like a bad dream. I remember weeks before that crying cause the children on the commercials. Thinking how hard that would be to have a sick baby. How I couldn’t handle it if that ever happened to me. And then like a bomb was dropped into our life, everything exploded.
J came back to the hospital I was still at that night. They wouldn’t transfer me with him and wouldn’t discharge me either. I was stuck an hour away from my baby I hadn’t even really met yet. That evening my ob came in to explain that she didn’t know what went wrong. To her, it was just another day on the job. Going over procedures. She went home and possibly never thought about it again. It didn’t affect her lifestyle, it didn’t cause her any pain. But it changed everything for us.
The next day they discharged me early to go be with Paxton. I couldn’t sit still. Come to find out later when we got the med notes, I had a second degree tear, they gave me a second degree episiotomy, and then I tore some more. The ride to see Pax sucked. I had to sit on my side practically laying over J. panicking any time we made a turn. I couldn’t wait to see my baby. I needed to see him. My body craved him. I needed to feel his little body close to my chest. I remember holding back tears the whole way from exitedness to see him, anxious to hear what happened and how he was, and just over all emotions. Finally we got there. The walk there was the longest walk I’ve ever experienced. Then there he was. Laying in a tiny glass bed. An overwhelming amount of tubes and wires connected to this tiny little human. He was being cooled.
Before we got there they had already done an MRI and knew he had brain damage. They we’re cooling his body’s temperature with a cooling blanket he was laying on. It kept his body at a very specific temperature. Like a thermostat, if his body got too warm it would cool it, if it got too cool it would let him warm up some. It’s called Therapeutic Hypothermia. When the brain is damaged the cells that’s damaged damage the cells around it, and they damage the cells around it. Making the injury bigger. Putting the body into hypothermia helps it to not spread/slow down the spreading of damaged cells. This medical technology isn’t very old. It started in 2006.
They had a screen showing his brain waves. They we’re watching for seizures and brain activity. There were times he had no brain activity, but they never lasted long…out of no where the room was alarming everywhere, and it was quickly filled with nurses. He was coding. We had to move out of their way and stand in the corner watching. Silently. Tears streaming down my face. I grab Just hand and squeeze. I couldn’t take it anymore. I had to leave. There were too many people, too many beeps and yelling, no way of helping. Only praying he’ll be okay. I run to the hallway.
“He’s okay! Come back in here mama!” I hear them yelling for me as soon as I stepped out. Thank you God.
After staring at Paxton for a few more hours J insisted we go back to our room. Our room was down the hall for us to stay in while he was in the NICU. It was a very long walk to take every few hours in the night to deliver my milk to Pax. I was lucky I was producing a great amount already. We went back to our room to finally sit down. My ankles were the biggest I’ve ever seen them. I called my family to vent about Paxton’s code and when I got off the phone and stood up I felt a large amount of something drenching my pants. “Please tell me that’s not blood!” I yelled for J. I ran to the bathroom leaving a trail of blood on my way. After getting me help J stood in the bathroom with me while I cried on his shoulder. I remember crying asking him why all this was happening. Why was everything going wrong? They rushed me down to the er to make sure everything was okay. My parents showed up again after J called to let them know I was in the er. He is so thoughtful💜. This doctor was a DICK. I had a baby in the NICU upstairs and here I am in the er and he treated me like I was stupid. He told me he needed to look inside to make sure I hadn’t tore my cervix. I cried. It was just the day before that I had had a baby, let alone the rips and tears I had. And he wanted to go BACK IN! I couldn’t stop shaking. My mom and J had to hold my legs still just for him to look. Luckily I didn’t have any nerves back yet and so it didn’t hurt too bad. I was then discharged.
After seventy-two hours of him being cooled they started slowly warming him up again. We were told we would know more about him and what happened when he was warmed back up. When that day came he was weaned off morphine to slowly wake him up. But at this point he was still on two seizure medications which made him continue to sleep. Luckily now we could finally hold our baby! We always chose skin to skin and he just cuddled right in. It took two nurses to get him out of bed but I didn’t care. We finally got to actually hold him. He was beautiful. So tiny and fragile.
J decided to bring me flowers from the gift shop. When he tried to bring them to our room the front desk yelled at him. They had to sit in the waiting room..but they definitely made me smile. My grandma had asked the desk if my siblings could come visit. They were five and seven at the time and was very upset about not getting to see the baby. She was told yes. After the hour trip to get to the hospital they were then yelled at by the front desk too for bringing kids. Made my brother and sister cry because the lady wouldn’t shut up.
Just so happened after the two unnecessary yelling arguments with the front desk they ” had someone else that needed our room”..our new room would be down stairs with only a hospital bed and pull out to sleep on. This hospital took care of Paxton, and the nurses were great, but almost all other staff was just terrible. Now every three hours at night I was supposed to pump for thirty min, take the milk to the next level up, go up every four hours to change his diaper, and somehow get back to sleep to do it again. It was exhausting. As if the sleep we were getting was real sleep😒.
When we were told we would have answers after the cooling we once again was blown off. They set up a meeting with us and his team to tell us what all he had. He had had two brain bleeds, three strokes, HIE (please click the link, it’s very interesting), a hole in his heart, and seizures. He also had a small part of his genitals that wasn’t closed up like it should be. That led to genetic testing. The tests revealed that he also had an extremely rare(only a few dozen in medical history diagnosed) chromosome deletion called 1q21.1 microdeletion(also extremely interesting). After doing what I believe was his second MRI after the cooling, yet again, more problems showed up.
Paxton needed to be transferred again..he had suffered a blood clot in his head. The blood clot was on his sinus cavity on the top of his head. Exactly where they used the vacuum..
We got to watch again as they loaded him in the little blue transfer box..those words will never bother you, till you see your beautiful tiny new baby strapped into one with cords all over and people surrounding you and you unsuccessfully try not to cry. I felt stupid for crying. Out of all the things we’ve seen all ready and been through so far yet that little blue box is one of the biggest triggers. It was like a milestone of my heart aches. I remember crying asking the nurse if she thought he was going to live. No parent should ever have to ask that. Fortunately she comforted us by telling us she wasn’t concerned about it being life threatening.
Hospital number three was so huge and confusing as we made our way to his new room in the new NICU. New hospital, new room, new staff, new rules.. Same glass bed.. Same feeding tube, ivs, and oxygen.
They got him on a blood thinner for his blood clot. He had to have two shots a day in his thigh. Soon after being at hospital number three we we’re allowed to try feeding Paxton. I knew since before I was even pregnant that I wanted to breastfeed. And boy am I thankful I chose that option. Fed is best but I’m a very big breastfeeding advocate. He started feeding for longer and longer. Doing weighted feeds to make sure he was getting enough, till finally with the help of a breast shield, we were able to pull the feeding tube! The last week we were there(three weeks total) he just continued getting stronger, eating more, staying awake longer and weaned off of oxygen!
During the last part of our NICU stay we decided to visit a lawyer about our experience with hospital number one. I won’t share much but I will say that hospital number two lied out their ass to cover for hospital number one. Paxton was kicking the monitors on my belly while I was in labor, but he came out “noodly”. Something wasn’t right. Hospital number two said in our meeting that “the HIE incident happened one to two weeks before birth”. Complete lie.
The lawyers we chose had also gone to school to be an MD. He was able to closely examine the medical records and send them to other professionals in other states(since hospitals cover for fellow hospitals). The fetal heart monitors showed my contractions we’re every fifteen or less and they were off the charts strong and the “low” dips weren’t low enough. Meaning my stomach muscles wasn’t giving him or me the break were supposed to have between contractions. It also showed his heart rate was going into the 210s right before being born.
We stayed in a room when we could get one but the last week of his stay we mostly just drove to see him every day. Finally it was time for a twenty-four hour room-in stay. We (me, Josh had just finally had the time to start working at his new job that had been waiting on him.) Had to care for him completely on my own. It was scary but nice. I finally got to see my child monitor and wire free for the first time 💜. The next day we went home. We mostly just stared at him for the first week..or month 😊.
At around two months old Paxton’s breathing started getting harder and louder. We took him to the pediatrician and he instantly knew it was tracheomalatia (floppy airway) and sent us to an ENT specialist. They stuck a black noodle cam down his nose and confirmed it was tracheomalatia. They said he wasn’t at risk for suffocation though because it wasn’t too bad. As the days and weeks went on, he not only was an extremely loud breather (called strider) but he cried constantly. Not like any colic I had ever seen. He cried day in and day out so hard he was purple most of the day and sweating extremely bad. He was having trouble gaining weight from burning his energy out crying. He was still gaining on his own time though so I continued to breastfeed.
Doctor after doctor always said “maybe the crying is from __?” But nobody ever knew. Since we knew he had tracheomalatia they didn’t think it was related. It covered up the bigger issue he had.
At three months of age we tried to do another CT to see if his blood clot was gone. He was still getting two shots a day at home. When we went in to get the CT he wouldn’t stop crying and moving long enough to strap him in let alone get the picture we needed. So we had to continue to give him the two shots daily for another month till he could get in again. This time he was put under anesthesia to keep him still. Great news! The blood clot was gone and we could now stop giving him shots! He was now only down to one medication, his seizure medication.
A few weeks later we had his last appointment with his heart doctor. They took a picture of his heart the day they looked for his clot. The whole in his heart was closed and we were discharged from another specialist! But they noticed before we left something nobody else had. When he cried(which again , was all day long) his oxygen levels would drop to the forties. The normal healthy range is ninety to one hundred… No wonder he was always purple! We knew something was wrong but till we narrowed down all his issues, all the symptoms were kind of just hidden by other issues.
They wanted to admit him that day but decided not to. They sent us to their ENT instead. Again, we were told his tracheomalatia isn’t bad. But finally they wanted to see why his symptoms we’re so bad with only mild tracheomalatia. We set an OR date for them to scope Paxton under anesthesia. They wanted to look past the vocal chords.
The day came. Nervous as hell we gave our baby over again. Praying for good news. Boy did we get the opposite of that!
The scope took longer than it should have so I knew something was wrong. Finally the buzzer they gave us buzzed. Letting us know they have something to tell us!
We waited in the tiny room for the doctor to come in. It was too long of a wait. The she came in and told us about the scope.
They found something they were not expecting. Down past the tracheomalatia and past the vocal chords, they couldn’t find his airway. After looking for a while they found a pinhole size airway. Over ninety percent closed. So on top of tracheomalatia, he also had/has subglottic stenosis (a narrowed piece of airway between the vocal chords and the trachea).
Little did we know at the time, he wouldn’t be coming back home for another six weeks..it was all happening again. The PTSD creeped in along with the walls around me. I just wanted to fall to the floor and cry. I tried to hold it together. I’ll never forget the stranger in the waiting room who gave me a hug and tissue. J stays very quite during moments like this. He is definitely my rock when I’m falling apart. I could never thank him enough for holding me up. For holding our family up. For working so hard and providing for our family. For being there every step of the way. I was definitely going to need him through this coming hospital stay.
When they scoped his airway on August 25th 2017, they tried to use a small balloon to dilate his airway in hopes that we could avoid a tracheostomy.
The 25th was on a Friday. All weekend we were back and forth between the hospital and home. He was heavily sedated the whole time because he had a breathing tube down his throat. He started fighting the sedation on Saturday so they had to put him in a medically induced coma. Covered in wires and tubes all over again.
Luckily I was able to pump there so supply his food. Thank God I had a small stash at home cause I wasn’t responding as well with the pump as I was his NICU stay. After we left the NICU we came home with three whole boxes of extra milk that I ended up giving away. He never took a bottle. This time though, I was so scared of running out. To most people it’s no big deal. But I honestly think he healed so we’ll partially because of my milk. It was very important for me that he continued. When I almost ran out luckily a trustworthy person was able to donate A BUNCH of breast milk till I could start responding to the pump.
Monday rolled around and they did another scope to see if the balloon dilation was successful. It wasn’t. They placed the trach and sent him back to the PICU. He stayed sedated till Wednesday. Up until then I had been sleeping at home. Once he woke up though, I knew I couldn’t leave him. We didn’t know how long it would take him to wake up.
Wednesday me and my mom drove up there while J went to work. I expected him to still be asleep when we walked in. He wasn’t only awake, he was happy! “Is he still on morphine?” I asked. “He’s only had Tylenol today.” I got in response. Who was this new baby? He was laying down without screaming, and his skin was beautifully pink!
We could finally hold him again! But we had to be very careful not to move his head till that next Monday when he would have his first trach change. It took one to two nurses to set him on my lap. It was a very weird feeling. I felt like I was holding a strangers baby. I didn’t want to move him or cuddle him or anything in fear of tugging on the newly made hole in his throat. They agreed to allow me to try to breastfeed again after arguing with them about how he won’t take a bottle. But when I tried he flipped out. I mean thrashing around, head flopping and all. He never breastfeed again..
Having another decision we made ripped away from me again broke my heart. Quitting breastfeeding but still hooking my self up to cables like a mama cow made me angry. Angry for the hospital putting the feeding tube down his throat before giving him a chance to eat. Angry at the whole situation.
We of course kept trying to orally feed him for weeks after, but he just wasn’t ready. And I see now that that’s okay.
One whole week had went by since they placed his trach and it was time for his first trach change. The room filled with people again, ready for the worst. They undid his Velcro ties around his neck, leaned his head back and took out the trach. My heart breaking the whole time. They placed the new one in and redid his Velcro ties. That’s when we learned he was still a breath holder..but he didn’t turn purple this time! He didn’t pass out like he had twice before from holding his breath(and also just not being able to breathe without our knowledge)! But he did turn very red. For the rest of the stay in the PICU he was known as tomato Paxton. It was extremely hard watching him cry and scream but make no noises. Completely silent besides the noise of his secretions building up in his trach. That of course led to more suctioning, as he still layed there crying and gagging silently..
Shortly after his first change we were able to leave the PICU and go onto the recovery floor where we would stay for another five weeks. The it was now time for us to learn how to care for him.
When you have a trach your body makes more secretions in response to the foreign object. First we learned how to suction his trach free of secretions so he could breathe when they built up. We had to take classes. CPR and a class to show us what to do with him and his trach in an emergency. We had to learn how to clean it, care for the stoma(the hole in his throat that the trach goes in), learn to bag him in case he can’t breathe on his own, how to give him oxygen if he needed it, and a lot more. The scariest part was learning to actually change the trach. We each needed to change it three times. While in our training his team set up a meeting for us. At the meeting they explained that we would require home nursing for 24 hours a day for the first two weeks and then a little less after that period of time. We hated the idea. We had cared for our son completely on our own since he left the NICU. Oh boy was my anger on level 10. But we didn’t have a choice.
A week or two before Pax was discharged we thought a gtube maybe a better option than going home with the tube down his nose (called an NT). He had pulled the NT out over six times those last two to three weeks. Every time it took them multiple tries to get it back in. It was very traumatic for him. Being held down crying while they repeatedly stuck it down his nose..we knew he wasn’t going to orally eat any time soon and agreed to the gtube.
Handing our baby over AGAIN to strangers, praying we didn’t get more bad news. But we didn’t for once! He came back from the OR cranky and sore, but OK!
Everything was put together for us to go home. Our training was done, classes were done, Paxton was doing great, and they found us home nursing to go home.
Coming home was a mess. We had to have the first new nurse ride home with us while the DME company (durable medical supply, they supply our machinery and supplies monthly) followed us home.
Our house is pretty small. It’s a two bedroom that needs a lot of work. We did have it set up that you had to go through our room to get to Paxton’s. Since Paxton’s was smaller than ours we had to switch our rooms before he came home. They said he needs a lot of space in case we ever had to call EMTs..they wanted us to move his room into the living room(I’m aware that that’s what works for some trach families, but it just wasn’t going to work with ours). No way was I going to have him on the other side of the house with someone I just met where I couldn’t wake up if I couldn’t hear something go wrong. After 5 months my sleep relied on the noise of Paxton’s breathing. Any time he got quiet, it woke me up. Our rooms are only separated by a door. I could hear every movement. I was mad that a nurse would be able to see me sleep, that every noise she would make would wake me up (little did I know I just wouldn’t sleep at all). We now go through his room to get to our room. It works, he definitely has more stuff than we do.
So our first few hours home was just packed full of people, and paperwork, and plans that didn’t matter to me. We were going to quit nursing at the end of the two weeks anyway. That night another nurse came for night shift. Pax had always been an amazing sleeper, thankfully. We didn’t want anyone messing with him through the night. We had already had a pretty good schedule down for months, I was not going to let anyone ruin it!(the night nurses at the hospital hated me for it😂🤷.) We told each nurse, day and night, that we didn’t want anyone messing with him. (I’ve already got crap about how trach mom’s think that’s rude of me, I don’t care to hear it.) They could play with him if they wanted, I didn’t mind that, but he has always been an independent player so he didn’t really care for them trying to play. All night the first night, after getting 4 hours of sleep in 3 days, this nurse will not stop suctioning him! His oxygen level and heart rate are fine, he doesn’t sound like he needs it! Why does she feel the need to keep me up crying till 5am is beyond me. All I could do is cry. I was exhausted and angry.
Every nurse after that never really even touched him. I was already a stay at home mom so I already had been changing diapers, feeding (even though he ate in a different way now, it still took about the same amount of time), cleaning, etc. He was still a normal baby, but with only a few extra tasks a day than normal. Very easy to care for as far as medical children go. He was already a “medically fragile” child, we just adapt. But the hospital didn’t care about any of that. I was under the impression from a social worker that if nursing didn’t work out with our family we could cancel. Boy was that bad advice!
The next morning we got a psychotic nurse. I won’t go into details. Let’s just say she tried taking over with Paxton and I made my mom come over one day and my dad the other day we had her. I didn’t feel comfortable alone in the house with her.
After the terrible first night and extremely weird morning, I called and cancelled nursing. A few hours later I got a call from our new social worker (who I absolutely love now!) She called to tell me if I didn’t rehire the nurses back she would have to call CPS on me. She was as polite as possible and I could tell she was only doing her job with how respectful she was. She was also pretty understanding and forgiving for what I said back😬. Since I didn’t have a choice I called to restart nursing..
I have to add..all of the nurses were very kind(besides that crazy one!) And they all knew our situation and most listened to us from then on. Some would not believe us and still come in the get Pax when he would wake up. And I would already be in there😂. They usually believed me after that. I was still pumping for Paxton so I was still up throughout the night anyway. These poor nurses had absolutely nothing to do though. It was more of a hassle having them than it was if I could just do what I do and not have someone watching me. Almost all of the nurses understood and even agreed. Some wanted to help and would note that we did everything in their notes. Yes, it was documented when I changed his diaper, when he got a bath, when he was suctioned etc. I know that’s normal for nurses but it’s not for my home. I’m a hermit. I want left alone unless I really like you.
After more than two weeks the team at the hospital told me they can no longer make us keep nursing. We quit ASAP. everyone treated us like we were crazy for not wanting them. Some even said “even if you only use them so you can take a nap or get some you time”. But all of my family lives in this town and we had a lot of help when needed. If I needed a nap, I have trained people I can trust. I couldn’t, and still don’t understand how they could justify me keeping them for me to be lazy. We don’t have any other kids, I’m a stay at home mom, my husband works, and I have trained family about 200 ft away and 3 min away.. I was so thankful to get rid of nursing. Thankful we have the option though if it was needed.
By seven months of age Paxton was still seeing therapy once a month at our home. They had never messed with him but more checked up on him. So far he hadn’t been behind on any milestones! We decided to take him out of early intervention at that time.
Around nine months my milk supply was just staying up no matter what I did. So we supplemented with formula for about a month and then it was fully formula(through the gtube) till about 13 months.
This last month, when he was 16 months old, he was discharged from the neurologist (brain doctor)! October first he’ll be eight-teen months old. Through having brain-damaged at birth (HIE), three strokes, seizures, and 1q21.1 microdeletion (all of which has a very high chance of causing mental or physical delays), so far hasn’t effected Paxton! I know we’re not in the clear for issues to come up, but anything he needs to overcome after all that, will be nothing💜.
Through the months we learned a lot more was done wrong during Paxton’s birth. Things I had no idea about. I learned that the afterbirth shouldn’t have been pulled out..that that could have killed me. There were places in the medical record that was pretty clearly altered. Some of it didn’t even make sense, and there were multiple straight out lies.
After telling the lawyers that Paxton got a trach we were told there was a possible third reason for Pax’s airway stenosis. The two we knew about but didn’t make since with his history was 1.it could be from an extended intubation (which if he was even intubated at birth, it wasn’t there the next day when we showed up). And the other reason is just being born with it. If he was born with it his oxygen levels in the NICU would have dropped and alarmed, and that never happened like it did at two months+. The third reason the lawyers said was the biggest possibly. He assumed the airway didn’t grow with Paxton due to the brain damage he was healing from at the time.
That lead to us diving right in on the lawsuit. In my stage you have to make a claim first. The hospital had six months to deny the claim which would start the lawsuit. We were four months into the claim when all of that fell apart too.
Come to find out, no matter how much neglected or illegal practices were done with Paxton’s birth, if we couldn’t prove the damage that was done was from their neglect, we didn’t have a case.
They were no longer confident they could prove that. Apparently it’s possible that Paxton’s rare chromosome disorder,1q21.1 microdeletion, could have led to his hole he had in his heart (ASD), which could have led to the blood clot he got in his head, and that along with the HIE it caused could have been what led to the brain injury at birth. As far as we know the HIE is the only reason his airway was so small.
We’re not sure what damaged was caused from what yet. Not sure if we’ll ever know. We have a plan to find out, but have procrastinated doing so..I guess we’re just not ready to go through the whole process again.
Paxton is 2 now! And he’s doing so great! We got past this winter with no serious sicknesses! We did have an ER trip a couple months back. Paxtons trach plugged in the middle of the night. We ended up doing CPR and getting him bagged and once he was awake again he was perfectly fine. He even acted like we woke HIM up! M strong man❤️❤️. The horror from that day brought on so many intense feelings of guilt and PTSD from the past. It was just more terrible images burned into our brain.
Fast forward to yesterday! They scoped his airway again like they do every 6 months or so.. except this time was the last time before his big reconstruction surgery that we’ve been waiting almost 2 years for! They looked inside and found more granulomas (growths of tissue blocking his airway) and got them out of the way. It was the last look before June or July when they go in and (hopefully) fix his airway!
Thanks to everyone who continues to keep our baby boy in your thoughts and prayers❤️
Pictures of before/after his scope. He, like always, did great and was sent home within a few hours after waking up!