Jan 7 & 8/ LOUIS DOES A MINY HOLD AND PICKS MASON UP.

I was not liking being back at work, I would constantly be thinking about how he is doing and I would even get urges to go see him in the middle of random things. Everything reminded me of him, It didn't help that it was getting a little hard to get ahold of his nurses at random times because they were either on break or in the middle of touch time and couldn't answer the phone. Luckily, They were flexible with me at work and I was able to call when ever I wanted. Since he had a different nurse everday other than the days Jenna would be in which were 3 to 4 days a week. I wouldn't be seeing much of her anymore though, because she worked the day shift and I would be at work during the day. She worked every other week end so we agreed to keep in touch when I called for updates and see each other on the week end to discuss further care. His nurse told me he was compleatly off the dopamine and he was having good gases so they were weaning on the settings he was really close to being on low enough settings to get switched back to the regular conventional ventilator. They went up on his callorie intake aswell to try and get his tiny body ready for when he did start to eat. I spoke to his doctor about his feedings and he told me he would discuss it with his GI doctor and depending on what he said he might be able to start feeding soon. It had been a month and Mason had not ate anything and I felt horrible about it. I could not stand the feeling of what it must be to not eat and get fed only through IV. So many things would run through my head like, I wonder if he is thirsty or I wonder if he gets hunger feelings. He had a repogle which took the acids and yucky stuff from his stomach but I still couldnt help it. I knew Mason would more than likely stay intubated until after surgery so we werent even worying about him still being on a vent being a cardiac baby and all. He was currently on lipids which was what was helping him gain the little weight he had. We were about a lb and a half away from our goal and Mason was gaining about half a oz every 2 days with no feeds. The doctor also explained to me that they would have to start off really slow and slowly go up and it was going to be a long process, and that if he started eating he would have to go NPO for surgery too and we would more than likely have to restart him over. I didn't mind aslong as we were making progress. Since I had talked to Louis about the great nurse Mason had the past 2 nights he decided to come with me on the night of the 8th. We both helped with Mason a lot and we even held him while they weighed and the respiratory therapist had me and Louis hold Mason and his ET tube. It was the closest we had ever gotten to holding Mason. Here we were a month later and we would say we held Mason for 2 minutes for the first time. Although it wasnt much I was still so happy and it was such a big milestone for us. I couldn't wait until the day I could hold Mason. It didn't matter if he was intubated but we needed him to be on a regular ventilator and not a high frequency. But we were getting close and I would dream of the day I got to hold him on my chest.

 

Something doesn't feel right

I have been meaning to write about this for a while now, It's something I have been feeling ever since I found the baby loss community a few months after Mason passed.I have met so many wonderful people from it and I have grown to love each and one of them for there story's. Yesterday when I went to the group at Millers in Long Beach we all shared our story's and some people mentioned how they felt bad because some have living twins and other's living children and then there's the rest of us who have no living children. Well I was too scared to mention it there because there was a new couple who's grief was so fresh it had us all bawling. Everytime I share my story of share about Mason I can't feel but feel left out. There is ties with most of the other mommies and there losses, some died in vitro others were still born but then theres that few small who had precious time before there baby passed minutes later. And here is ME someone who was "blessed" with her baby living 169 days. But I still feel like I am in my own category because I know some people who had there babies but that died because of SIDS. But I have yet to meet and really interact and get close to someone who has had a NICU expirience aslong as mine. I wasn't just blessed with 169 days. Every day he was alive was a struggle, every day that passed was just more motivation that he was going to live. I don't feel like I belong sometimes because I am scared to talk about all my expiriences with him. I feel like some people look at me like "why are u suffering, atleast you had time with your child". But the fact of the matter is no matter how long I had with him HE DID DIE. So I am also suffering, it may be a different suffering other parents who had stillborns have but it's still painful. I have never made it seem like my expirience was harder than any others. And I have yet to hear anyone tell me I dont belong either. I have these feelings on my own and I have had them ever since. I dont belong in any group, I know people who have had NICU babies, but I just wish there was more people I knew who had a story a little more similar to mine, someone who had there baby, someone who spent months in the NICU back and fort with there baby someone who never brought there baby home. Someone who never fed a bottle or nursed there baby. Someone who never gave there baby a real bath other than a sponge bath the whole 6 months he was alive. Yes my baby was born, yes he did survive for nearly 6 months but I can't seem to relate much because most of my close BML's never had time with there babies. In a way I feel bad, almost like if my child was actually living.

Jan 5 &6 / MASON GOES BACK ON DOPAMINE

Masons PDA started closing he received 3 boluses of Dopamine but it did not help so he was put on a drip once again. They did an echo that showed a very small PDA. They had already doubled his PGE but luckily there was still room to go up on it some more. It really sucked that I was back at work and the only little time I had with him he was super tired and just wanted to sleep. I was hating work at this point for taking the little time I had with my prince away. Although the 5th was a very challenging day we managed to get through it. They didn't put him on such a high dose of Dopamine which was great. They did do a chest X ray where they found pulmonary edema which is common on people with CHF. I had joined some groups online with parents with children with a Coarctation most of these kids developed it much older and none had any experience with a preemie baby this small having surgery, yet alone making it. The thought still haunted me, I knew he needed this but how could such a tiny baby go through open heart surgery. They say your heart is as big as your fist. Well his couldn’t have been any bigger than a grape. How can any doctor operate on that yet alone fix it. I put my faith in God and trusted that everything would be ok. I did know one thing; the doctor that would operate would have to convince me before he took my baby in and opened him up like that. Work was going ok; I was slowly getting use to routine again. Wake up at 7am head to work be there by 8am 8:15ish I would call Millers "Can I speak to the nurse taking care of baby boy Morales" would be something I would repeat 3 times a day before I went into to see him myself. I tried building a bonding relationship with every nurse, just so that I can persuade them to treat Mason a little kinder. I had seen some really fucked up nurses but luckily my baby was a critical baby so only more specialized nurses looked after him. He actually had his own nurse every shift while most other babies had 1 nurse for 2 babies. The 6th came around. And although it wasn’t the 9th yet he was now 4 weeks old!! Which was about a month? Mason had changed so much in the past month I couldn’t believe it. He was doing much better when I went in that night and he had one of the greatest nurses I had ever met. She made sure I was informed and was comfortable with all the info thrown at me, she made sure I did all his touch time i.e. change his diaper, clean his face off help with suctioning help with positioning help with weight. I loved her to peaces! We chatted and chatted and before I knew it I was leaving that place at around 1:30 am only because she was going out to lunch. She even took a picture of me and Mason and she offered this all on her own. I didn't want to leave because of how comfortable I felt. And that what I wanted to be able to go visit my baby with no restrictions. I was beginning to know him better than these nurses who would just have him for a 12 hr shift.He weighed in at 2lbs 13 oz today, we were getting close to 3lbs now!! Today was Jan 5 & 6 and we found us a night shift great nurse.

JAN 3 & 4/ MOMMA HAS TO RETURN TO WORK =(

So my dad had been attacking me with the question, that awful question I hated answering but as a parent and a responsible one I knew I couldn't put it off any longer. He had been asking me for the past week if I thought going back to work now and taking my leave once Mason came home seemed like something I would want to do. I gave it a lot of thought; this meant I would work from 8 to 6 and then go see my baby after shift change which was from 6:30 to 7:30. I would then stay with my baby till around 12 and then go home to do it all over again. It seemed like a lot to handle especially because I had, had major surgery just a couple of weeks before. I was still recovering even though I would be up and down all day. I was beginning to notice that since I didn't get the adequate rest I should have I was beginning to get sharp pains up and down my back. My mom told me it was because I was out in the cold so much while recovering...That I will never know but I still get those pains right where the spinal went in sometimes, its sorta weird. Well despite all of this my motherly instincts of wanting to provide everything for my son also came in. I was making around 2500 a month and if Mason was going to be in the NICU till March maybe April I could save another 5 grand before he came home. Of course I felt invincible and like I could do anything. Little did I know I would be putting myself through HELL. This meant work and hospital, EVERYDAY and of course the weekends were my time to really be with him. Anyone who knew me while Mason was in the NICU knew that every waking spare minute I had would be spent with Mason and I will NEVER regret that. I know it's something Louis regrets, he was always under the mentality that "I will see him everyday once he comes home" of course that pissed the fuck out of me but I didn't let that bother me at all...throughout Masons stay. People had different mentalities about it, like why don’t you take today to go do something for yourself? Well how can I even enjoy myself when my baby is in life threatening conditions? I built a world around me and Mason. A world only me and him knew about. And it would only get better and better for us. It was me and him against the world, me and him. At this time Louis was a lead at his store, He had already told his job he wouldn't take his leave until Mason went home and they agreed. Well, I told my dad ok, I will go back to work not only because I need the money for when Mason came home(I knew we would have to hire a nurse sitter since more than likely he would come home on oxygen) but because I knew he needed me too. It was Sunday so he decided to come with me in the mornings, my dad had fallen in love with this little guy more than I could ever imagine. We took him 2 little stamps my dad had had in his wallet for years. He took him a St Jude and a Virgin Mary stamp because he said the Virgin Mary takes care of all the children as well as St Jude. We pasted them right on his Isolette, They would protect and guide Mason. This was my dad’s first grandchild, my brothers are his stepsons so as much as he considered them his grandchildren none were his grandchild like he was, I was his first living daughter and this was his first BLOOD grandchild. It didn't help that the whole world told him Mason looked a lot like him. My dad had ALWAYS wanted a boy, but he got stuck with 5 girls a heavenly one, my heavenly sister me my sister Katherine My sister Kathia and My little sister Kate. He had always dreamed of a boy and what he would look like, and this was it just that he was his daughters. I can see the love in my dad’s eyes, he admired him, he admired his strength he knew how courageous Mason was and he wasn’t afraid to admit it. "He wants to live" he would tell me that on a daily basis. Mason was doing good they had lowered his solu cortef from every 8 hours to every 12 hours which meant he was requiring less and less blood pressure support. This was the least he was requiring since he was born. I was comfortable going back to work with Mason's progress, this would hopefully make time go by faster and not have me thinking the whole time. Going back to work was the same; nothing had changed other than a stack maybe a foot high of papers waiting for me. This meant I would be busy all day and my day would go by quicker. I was wrong, fist of all I hated being up at 7am again as soon as I stepped in to work I called to see how my little man was doing. He had had an ok night I told the nurse I would call back on my lunch and that I would be there after shift change. I managed to make it through my first day of work and as soon as 6 o'clock hit I was out the door and headed to Millers. When I arrived they informed me they had done an echo that found a small PDA. This was not good news as we wanted to keep his PDA large until surgery; Doctor came in and told me he was going to double his PGE which was the medication to keep it open. I felt confident but I was not ready to take another 3 steps back when we had just taken 1 step forward. I hated that this was a roller coaster ride and that at any point we could go straight down. I sat with him and prayed, and told him to only fight as much as he could. He was off one of his sedations so he would smile at me constantly and it melted my heart. This was Jan 3 & 4 and although I still had not heard my baby cry or held him I was still the luckiest mother on earth.

JAN 1 & JAN 2/ MASON GETS MRSA

It was the new year, we had just finished 2009 and it couldn’t feel better. I knew it was bad news as soon as I got to the hospital because my baby was gone. I didn’t know what to think at first, I got kinda scared but figured if anything serious was going on they would of called me. Feeling confused I went up to the NICU front desk and I told them “My baby is missing, he isn’t where he has been the last 23 days.  They asked me who my son was and when I told them it was baby boy Morales the lady smiled and told me right this way. She told me my nurse would explain why he was moved. He had been in room 288 that it was weird to go into a whole different room, It was a huge room filled with maybe 13 babies. I quickly glanced around and didn’t see Mason at all. She walked me to the back of the room where there was 2 additional separate rooms. She told me Mason was to stay in Isolation for the remainder of his stay. Confused I asked why and she told me his cultures had come back positive for MRSA….I freaked because I had no clue what MRSA was or its effects it would have on him. I asked and she informed me that MRSA was Methicillin-resistant Staphylococcus aureus, She told me it was a bacterial infection that was resistant to some antibiotics but that they were treating him with the most potent ones they had. I asked her if this was the reason Mason had gotten so sick the last few days and she told me it might be. She also went on to tell me that because Mason had MRSA he would have to be in Isolation when ever he was admitted to a hospital…forever! I asked her where he could have gotten it and why. She explained to me that hospitals are full of bacteria but that our immunity fights it but since he hardly had none it was easy for this bacteria to colonize. They did a nose swab, a throat swab and a fistula swab and the only thing that came back positive was his nose. They would re do the culture in 4 days after the treatment of antibiotics. Regardless of the infection Mason was still doing pretty well, he continued to be off the pressors and they were continuing to wean on his ventilator. The goal was to get him back to the conventional ventilator and take him off the high frequency.Although I was upset that on top of all of Mason's problem this had to happen, I didn't mind having our own room. It was more spacious, I could have my own chair even rocker for when I start holding Mason. I could keep more of his things there since we all know his stay is long. This would be his room for the rest of his life. The last 2 days had been good days Mason was doing good off the pressors and they had even changed his only blood pressure medication from every 6 hours to every 8 hours. Things were looking good for Mason he had a scheduled eye exam to check for ROP on the 9th. Other than that we were cherishing every second with him.

DEC 30 & 31/ MASON'S FIRST NEW YEARS.

I had been spending all day with Mason, since he was really ill because of his infection I couldn't help but just want to be there. I stayed for both shifts both of these days. My parents had asked me to go on their yearly trip to Vegas and I kindly declined and said I would be spending New Years with my boy. His first new years and here we were in a hospital and yet I couldn't be happier. They had re sent some cultures that morning to see if anything grew back, so far some staph infection had grown. I had a talk with the doctor about putting Mason on a constant antibiotic, Jenna had recommended I do this so I did and he agreed and that he would keep him on amoxicillin. He was currently on Vancomycin for the infection which had grown some staph but they were still trying to identify the bacteria. Mason received a blood transfusion in the morning and a few hours later he seemed to be doing a little better. I couldn't do much but sit there and stare at him and occasionally talk to him when he would wake up so I started thinking a lot. I thought about his life, and how it would be. I remember hoping he had a normal life and that he didn't have to suffer having more surgeries later in life. They scored his pain pretty high today couldn't help but think the pain from his first surgery was there. I couldn't help but think what it must feel like to stool into a bag. Or to have no opening back there, I never felt sorry for him but as his mother I felt everything he did. He had to go through that and still fight with a broken little heart that needed to be fixed. On top of all that I couldn't help but imagine what it must be like to have a tube shoved down your throat 24-7, or to not be able to eat anything. I sometimes would sit there and cry because I knew he wasn't comfortable and there was no one to blame but me. My body was the one that failed him; he should be growing inside of me not in this glass box. I would say a prayer with Mason every day, and pray to God to give us the strength. I needed God more than ever right now and I got closer to him than I had ever imagined. I developed a close relationship...more like a bond where he was so good. God had answered my prayers so many times, specially that night Mason was close to dying. It was who I relied on for my own strength. I couldn’t believe my baby was now 21 days old, It was surreal I am a mother! He was requiring a lot of pressors but I knew it was because of the infection and everything would get better once it passed. On the 31st I left in the morning and Louis told me he would catch up with me when he got off at 2. I woke up with a good feeling; I wanted to start the New Year right. I wanted to pay even more attention to everything going on with Mason. With all this going on I had no time to think about myself so I never even went to my postpartum appointment and I had a C SECTION! This is how busy my life in the NICU was. When I got there the nurse told me Mason was doing a little better, He was just going uphill after that transfusion. They were able to lower his pressors in the morning. He was having good blood gases and they were even able to lower his settings on the vent. He was still on the jet but we were getting closer to him getting off. He was a little more stable so we were able to weigh and I was able to read to him. I took pictures, and talked to the nurse about his progress and how stable his blood pressure was. She weaned while I was there about 2 times and even turn off the Epi and Mason was still doing good. Shift change came around and Louis and I visited our baby he was now 22 days old and 2lbs 10 oz he was growing so much although he wasn't eating. We had a GREAT night with him, he did SO good that they took him off ALL his pressors. I knew the infection was going away and Mason was now recovering and getting better. This was a huge milestone for us and there wasn't a better way to end the year than this way. I was confident that we could get to anything. Our focus was to get to 1800 grams for surgery so that he could finally get better and we were going to do just that...So that we could take him home and he could finally have some rest without being bothered every 2-4 hours to get poked for blood gases. I was so happy he was asleep so me and Louis decided to go home and celebrate the miracle of life we were given. We got home at about 11 and got some dinner on the way and some wine. We knew we had left our baby peaceful and in good hands and for once in the last 22 days I could breath and for once in the last 8 months I could have a drink! We had a toast to the precious gift we had received, we thanked god and we brought in the New Year thinking it was the beginning of our lives with Mason. This was Dec 30th and 31st and Mason survived his first New Years