I have wanted to post how i experienced joshy's last two day's but every time i go to write about it i stop half way.
Well i have decided to write even it all down this is what happened as i remember.....
On April 20th we arrived at the NICU (me & jonathan) excited to what was to come and what we thought was the last weeks we would be spending in the NICU. We arrived that day ready to learn how to put his NJ tube in.
The day prior we had just had a sit down conference with joshua's NEO, surgeon, his primary nurse, & social worker to discuss joshy's plan. It had been six months and after months of waiting we finally heard the words we had longed to hear "Lets discuss discharge" Was this really happening ? the light at the end of the tunnel ! He was coming HOME! He was on pump feeds and still on oxygen and would have to go home on those but that was a piece of cake! We would be bringing our boy home and that's all that mattered.
As usual we walked into the NICU camera at hand ready to take some pictures of our sweet monkey.
His primary nurse had just finished giving him a bath and was getting him all dressed. He wasn't happy at all. His cry, witch didn't sound anything like a "normal" babies cry was heartbreaking. Because he had spend so much time off and on the vent, his tracheomalicia & strider his vocal cords had become damaged. His "voice" sounded much different then what i remembered the last time i had heard his "voice". His nurse finished drying him off and dressing him but he would not settle down. She handed him to me and i finally got him to calm down. He wasn't crying but whimpering, i sang to him and held him tight. I really needed to go the restroom so i handed him over to jonathan, ran to the restroom and came back to joshy sating in the low 80's they uped his oxygen and he came back up a bit but was still sating low. She bumped him up as much as he can i can't recall the how many liters he was on but he was on maximum amount of litters. Dr. Berrios ( who also happened to be the NEO was his first neo at ALTA BATES) checked him out and asked to put him back on the table. The table is like an open isolette, he was slowly but surely moving backwards. He was starting to run a fever and they started taking cultures, no more feeds, and possibility of getting him back on the vent. ALL this in the matter of hours.
seriously WHAT THE FUCK happened ? my son was fine, he was getting ready to come home, nobody that was sick (me nor jonathan) had come to visit him. He was FINE just yesterday, we were supposed to be learning how to care for him at home, how can they be discussing putting him on vent ? ........Something was wrong, something was up and i had this gut feeling this was IT. My son was going to pull through or.....
We stayed there as late as we could he fever finally broke and non of his cultures had grown anything. Based on his X-rays they were suspecting pneumonia, piece of cake! my son had beat that before he we would beat this too. We left and told our primary to call us in case ANYTHING out of his normal happened .
Jonathan left to work and i left home. As soon as i was walking up the stairs to our condo i got the call i knew i would be getting, It was Julia the Fellow and she informed joshy wasn't doing so great, he was back on vent but soon would be put back on jet vet. They weren't sure what was going on but so far they had it undercontrol. I told her should i leave right now to be with him ? she said "No yesenia, rest, i PROMISE to call you if there's change of plans:" this was around 9 i called once more before going to bed and his nurse told me there really was no change, told me if i wanted to call 80 times more in the night that was okay, she was his only nurse for the night,
*RED LIGHT, RED LIGHT*
babies who have just ONE nurse for them is usually because they are extremely sick.
I called jonathan and told him what was going on, he told me try to get some sleep when i get home around 1:30AM we'll head over there so just rest, We hung up but i couldn't settle down something was happening with joshy i COULD FEEL IT ! sure enough 30 mins passed by and it was no longer his primamry calling me but julia. I will never EVER EVER forgot our conversation
Julia : Yesenia, Hi .....do you think you and jonathan can come to the hospital right now ?
ME : Of course Julia, Whats going on, whats wrong with josh ?
Julia : When you get down here we'll talk ----------end of converstation
I have no idea how i got ready so fast, I called jonathan and told him they needed us at the hospital ASAP to call his mom and dad and my sister and brother in law would be leaving with me and my mom in 15 mins.
During the care ride my step dad in our car and my sister in hers drove so fast. My head was blank my heart heavy. I knew was julia wanted, i knew what she was going to tell me. I didnt want to hear it. My son was a a survivor he was going to get through this DID THEY NOT KNOW HIM! DID THEY NOT KNOW HIS SPIRIT WAS NOTHING TO MESS HIM! HE WAS STUBBORN LIKE HIS MOMMA.
Me , Mom, Stepdad, sister her husband and my papa bear all came with me into the NICU. It was 11:30pm and jonathan would be out from work in just 30 mins. We all walked over to josh and,,,,,,,,,,,,,,,it was josh. he was 10x more then i remember him just this past morning. he felt cold. The dr informed me they actually had just had to give him adrenaline shots and actually had to use the crash cart on him. He had flat lined and she had to do chest to chest compression just before we got there.
I was speech less, i heard everything everyone was saying but i couldn't / didn't want to comprehend what they were telling me. They gave me a couple of minutes to touch him and talk to him i mostly cried while looking at the screen.
Then julia and this fellow i had never seen before asked me if we could go to the office to talk. I told her Jonathan is still not here, she said we'll go over this with him but want to make sure we let you know what is going on and what the plan is, This is how it went,
Me & Tania (my Sister) walked in to a room,
four chairs were facing each other, two to two
Tania and i sat in two and facing us was Julia & the other fellow
Julia started off with this:
Yesenia two days when we had the meeting about joshy and he was ready to go home we asked you something, your answer to that was you would continue to advocate for your son and give him a fighting chance as long as he wasn't in pain and he was still fighting
Me: yes Julia, that;s correct i said that,
Julia: Yesenia , the time is now. You said you would advocate as long as he wasn't in PAIN . Yesenia ( in a very sad yet serious face) he's in pain, we are just PROLONGING his life. his organs, his kidneys (he hasn't peed in two days) His liver , His edema its all reached the breaking point ALL OF US HERE LOVE JOSHY AND SO WITH A HEAVY HEART I TELL YOU yesenia, you must let him go. Keeping him on the vent and his meds is doing NOTHING he is in pain. We the hospital have decided if he goes into heart failure one more time THERE WILL BE NO INTERVENTION
..............................i didn't know how to react, my legs started shaking, no tears came out. My sister held my leg and asked me WHAT DO YOU WANT YESENIA, i couldn't answer, i couldn't think. The Dr's kept talking and explaining things to tania but i just sat there, my head blank. these people had just crushed my heart, I couldn't move. My sister grabbed me and we walked out to the corridor at that exact moment jonathan was walking towards us, Up till now all he knew was josh wasn't doing good and that is all. i ran to him. I hugged him and told him in his ear
"our son, our joshy, he's dying, he is going to die, they can't do anything. He's going to die:"
he started crying let go of me and banged the walls a bit without saying a word.
then we all went in to see him. Just in that short amount of time our son was no longer looking like our son. the water retention he was holding was amazing, Jonathan asked permission from the charge nurse how many of his family would be able to come see him and how much time he had left. They told him because of our situation they would make a exception because he didnt't have to much time life. I just sat there next to joshy talking to him to keep fighting but if he was too tired as much as i loved him i wanted him to be free,
In the next couple of house ALOT of jonatha's family arrived, most if not ALL were seeing him for the first time. they all got to talk to him and see him. they spent most of the night there Here is a memory that is IMPRINTED in my memory forever as is by far for me the perfect way joshy could of spend that night. His tia's ANA, ALEXANDRA,SAMMY,DENISSE , MY SISTER, ME JONATHAN, AND JEREMEY and PLEASE IF I FORGOT YOU FORGIVE ME . As i rocked joshy skin to skin they surrounded me sitting in their chairs and spoke about astrology and lady gaga, and other stuff. This memory is one of my FAVORITE moments ever. IT WAS PERFECT joshy got to hear all his cousins ans aunts.later on my best friend channellla. came and spent the remainder of the night with me while i held josh. we just talked and talked, Joshy just laying on my chest, Hr heart rate great and from what i could tell he was enjoying having them their. Then everyone left and it was just me, joshy and jonathan. One of our favorite primary nurses came back and brought us back a stay awake survival bag. filled with
TWO JUMBO RED BULLS
TWO JUMBO BAGS OF CHIPS
TWO JUMBO BAGS OF CANDY
AND TWO LARGE EXPRESSO
All the nurses expected joshy to pass away that night but NOPE! they kept telling me you can take him of then vent and hold him while he takes his final breathes outside so he can finally feel the sunshine, I felt like they were pressuring me so i just kept brussing the comments off. Then we decided that joshy should be baptized since we knew unless a miracle happened it could be any minute now. He got baptized right on his table, with my sister tania & jeremy as his godparents, surrounded by family, This was probably the scariest part i had experienced till then.
Vicki joshy's FAVORITE primary came back to check on us and see how joshy was, this was her day off. they kept telling me if you dont want to completely take him of the vent you can get him off the jet vent and get him on the normal vent so you can hold him more and then when your ready to go outside to spend your last moments with him he will just be on cunala.
So she switched him over from jet vent to normal vent and handed him to me. In the seconds it took to do that he flatlined and i broke down telling her "its my fault, everything is my fault, my poor baby"
everyone there started crying and sobbing. THEN couple of seconds after his heart started pumping again. He wasnt't ready!! i will never be able to thank vicki for coming out that day ON HER DAY OFF to help me hold josh. Well this was day two. After two days/nights of no sleep or eating me and jonathan by pleas of the NEO's Nurses, and family decided to go to the hotel room my mom had rented us to "try" to get some sleep. half way into our sleep another fellow calls me and tells me, we just wanted to let you know we have taken joshua off NO because it's really expensive and its not doing anything,,,,,,,,,,,,,,,,,,,,,,,,,,,SERIOUSLY!!! TO EXPENSIVE!!!! i woke up Jonathan and told him we were headed back to the hospital RIGHT NOW! We all got ready and arrived at the hospital i spoke to the fellow and told him that i was completely outraged they were giving up on him and taking medicine away because it too "expensive" and can't be wasted. After my long talk i walked over to joshy who had somehow ballooned even more up. all the water he was retaining was trying to find a way to escape and so when i went to change his diaper--------be warned this is explicit-------
His penis did not look like one, it was large and looked like a ballon. his genital area were all huge and one of his testicles being so big had found a way to release water from the skin and it looked like someone had popped a balloon and water was slowly seeping out. this extreme water retention wasn't only there it was EVERYWHERE, it was at that moment that I as his mom, as his mom who fought for him, who ADVOCATED for him, who LOVED HIM more then life itself, realized. It's time to let my son be at peace. I called Dr. Berrios and we set a plan. She would allow as many family members to come and spend the last moments with him. They would keep him on the vent and keep him as comfortable as he could be to give me time for me, my mom and sister to drive to babys'rus and pick a new outfit for him. when we came back we would dress him, take him off all meds and we would walk him to the garden outside so he could finally see outside.
Me, my mom and sister drove as fast as we could to babys'rus. The two of them helping me pick out a outfit. The last time i had picked out a outfit for him two weeks ago he was wearing a 0-3 months clothes. this time two weeks later we were looking for 18-24 month clothes...............yes that is how much water my little man was retaining , I remember a employee coming to ask us if we were looking for an outfit for a special occasion. nobody answered......Here i was looking for the PERFECT out fit so my son could pass away in. No MOTHER SHOULD EVER HAVE TO DO THIS.
we got back to the NICU and so the process started except the clothes didnt fit him!!!!! can you believe it!?? do in order to get him to fit into it, we cute the sides of the polo onesie and taped it back up. Then we put on his first pair of puma little crib shorts, a infant kango hat, and a brand new baby bear blanket. Our nurse told me they were ready it was just on us now to tell them it was time. I really had to go to the bathroom and i asked jonathan to hold joshy, his dad was right there he had never held josh EVER so i insisted yes "yes don alex hold joshy" i waited to make sure hid stats were stable. 5 minutes after him holding seeing as josh's stats were good i told them i would be right back.
I walked into the waiting room which was filled of ESCOBARS lol joshy has a large family and they had all managed to fit in the two room waiting room. I asked them if they knew where my mom and sister were they told me they were in the cafeteria with joshy's aunts. so i went to the restroom and took the elevator to the cafeteria. This whole process from start to finish was about 7 minutes i arrived at the cafeteria and their they were , i sat down took a bit out some chips sammy had and then it happened the moment i WILL NEVER FORGET
The charge nurse ran up to me, she grabbed me and with out saying a word we both started running, we stood in front of the elevator and she nodded her head and whispered this is going to take to long lets take the stairs. There was no need for her to tell me what was going on, I KNEW it was time. IT WAS THEE time, We ran half the flights of stairs when i let go of her hand and started hysterically crying "I CAN'T DO THIS! I CAN'T DO THIS" "yes you can! she told me, i have seen you all these months you are one of the strongest moms i have ever seen" She grabbed my hand and we kept running, most of his family had become aware of what was going on and was being let in on the other side of the NICU. She slipt her card through the DR, NURSE entrance and the doors burst open she held my hand and let me to josh. i will NEVER forget the look of one of the mom's that was holding her preeemie. she wasn't crying but her eyes, if her eyes could talk, she felt pitty but there was joy in them, better her them me. that's what those eyes said. i walked over, my father in law Alex was holding joshy. He was blue and cold. I looked up at his STATS and everything was 0 just a second later they actually tutnred off the monitor. Everyone was crying including his NEO's. Alex handed him over to me and i rocked him and told him i loved him, to please come back, not to leave me alone please. i repeated this over and over.
I don't know why he choose his grandpa to finally go and i have never talked to his grandpa about how he was feeling and if he actally felt joshy take his last breath. I know we'll have this conversation one day. it just hasn't happened.
The rest of what happened is a blur and not sure if its in order.
I know we gave joshy a bath after, i wanted to put the same clothes on him but they were full of blood that kept coming out his nose. so the NICU found some nice clothes and we wrapped him up. First we cut some of his hair and took his footprints and handprints then me and jonathan walked out to the garden and spend some time talking to him/ I told him,
this is what the sky looks like joshy remember i used to talk you about the sky and all the beautiful things i wanted you to see when you finally came home. I showed him the flowers. and enjoyed holding him, outside, no wires, no anything.
The nurse came back to tell us the rest of our family was waiting in the chaplain. again it was A LOT of family. So much family that was meeting him for the first time.
We spent an hour or so in chaplain with everyone saying prayers saying goodbye and hello.
Finally it was time to go back upstairs to the NICU. They had already put all his toys, clothes, blankets into bags, this was it. We were leaving the NICU. We were leaving the NICU but us with our hearts torn out and my son, my precious son who just one week ago was doing GREAT, my son who was supposed to be leaving WITH US not in a bag, NOT TO A FREEZER .i have no idea how i walked out of that NICU however i remember silently crying and my father in law hugging me we kept walking and then we reach the wall across the elevator and i realized i was probably never going to come back and my son had just died. DIED. my first born baby had just DIED, i lost it. i put my head against the wall and starting sobbing, sobbing like i've never cried before. curling my way down the wall to end up in a fetal position. lightly slamming my fist against the wall and crying "no......why........what am i going to do" my father in law just held me and pulled me back up and braced on to me in a tight embraced hug with my head on his chest while i sobbed, I really have not idea how i got home that night. did jonathan drive ? did we talk ? how did i sleep that night ???????
This was the day that defined my life. I entered a new life. a life i didn't want. I lost my first born, he was six months old and spend his whole entire life in the NICU. I was a NICU MOM, i was a mom, who the fuck was i now ? why the FUCK did this happen to me ? Did my son REALLY just die ? ...............no, no, this is all a fucked up dream, wake me up jonathan, i dont like this dream........................
There you have it. the days's leading up to joshy's death, grammatical errors and all. I will never forget those days leading to THAT day. They are etched on my brain like a tattoo that you would like to get rid of but you know its never going to fade, their will ALWAYS be traces of that tattoo AND this is a good thing. I want traces I WANT THE TATTOO! that's all i have left tattoo's of memories. This tattoo is different no one can see it. only you. only you can. You forget you have it, but its not often it happens. I like my invisible tattoo. Its my reminder, you were loved, you loved, you are strong, you gave birth to a miracle. He will always be with you so what if people don't like your tattoo because it's changed you, SKREW THEM! and yet even though they don't like your tattoo and hate hearing about it they PITY you, and are nice to you, but avoid you, they don't mention your tattoo because they prefer YOU have this tattoo than them.
We had a BEAUTIFUL crib set up for you at home but instead you will forever lay in your casket......