JAN 15/16/17/18/19/20/21-LOTS OF SKIN TO SKIN AND GETTING READY FOR SURGERY

The 15th was the first time daddy saw me carrying Mason. He was just as excited as I was. I would totally get excited and that is all I looked forward to all day. Work was going alright. Really looked forwards to the week ends to get to spend much more time with Mason. My mom and sister in law were preparing and planning for my baby shower!! it was exciting to be able to get more things for Mason but it was very uneasy thinking about getting everything together. My baby shower had always been planned for the end of january since my due date was March 1. we kinda figured he would come earlier...but never did we think this early!! My one month old baby was now 37 days old...33 weeks and 4 days gestation and 2lbs 14 oz!! 1260 grams we were getting pretty close to our 1800 gram goal till his surgery! I couldnt believe he was now almost a 3lb baby and I was now able to hold him! Today they changed his feedings to 3mL ever 3 hours! daddy took a bunch of pictures of us and even a video..a video that till this day breaks my aching heart.

 The week end was here and it was great! no work, nothing but me and my boy! he had a new nurse on saturday that was kind of scared of me holding Mason but I assured her that everything would be fine. I only got to hold him for an hour because he was having some desaturations which I didn't like so I decided to put him back quicker than before. I think it was the way they placed him on me that his tube was getting cut off so he wasnt getting enough oxygen. I loved when I got to hold him because he would just fall asleep so good. He was still tolerating all his feedings which was great! Sunday his hematocrit level was a little low and of course I started worrying about infection. Nocosomial infections had been setting us back more than enough that is why I tried keeping everything clean to try and avoid infection as much as possible. He ended up getting a transfussion that night but was doing good enough to have his 2nd shower by his 9 o clock touch time. I held him for like 30 minutes and then I put him back so we can shower him, I loved showering him beause i could only imagine how dirty he must feel. He would always fall right to sleep after showers so that was good. I knew he would have a good night. Everynight was the same routine, I hated saying goodbye...I would stare and stare for minutes on end saying goodbye to my precious boy thinking this could be the last time I see you. I loved him so much...It was back to work tommorow and a long week of work and NICU time with Mason. My schedule was so hectic I was always so exausted.

The week went off to be good I worked and Mason continued to go up on his feeds by the end of the week he was 3 lbs 5 oz! I just knew that by the end of the month he would be big enough to go through the surgery we had waited so long and patiently for. It was nerve wreking but I just wanted it to be over. I had yet to talk to a surgeon yet but the doctor told me it would be a cardiac surgeon from Millers and that he would probably be taken up to the PICU for it. He was now 44 days old by the time the 21st came along almost 35 weeks gestation. He was growing slowly but surely. His vent settings were getting lower but I knew they would only go back up by the time he went into surgery. Although I was terrified of him having open heart surgery I knew this is what he needed to survive. And it was a risk we would have to put in Gods hands.

Jan 13 & 14/ I DO SKIN TO SKIN WITH MASON FOR THE FIRST TIME

I was at work and I suddenly got one of my urges, I would get these urges from time to time to go see Mason because I just missed him so much. I called in the morning and Jenna answered!  it was a relief whenever she would take care of him because I knew she took extra care and made sure doctors did things to get him to move forward. She told me that as soon as doctor did rounds she would ask if they could make Mason's feedings every 3 hours instead of 6 since he was tolerating them really well, and see if maybe we can up to 2mL by tomorrow. I told her that was great, she also told me that soluf cortef was almost ready to be discontinued which was great great news that meant Mason was doing unbelievably well. I told her I was going to try and get off work, tell them a doctor needed to talk to me and I needed to leave early. She told me she would see me, at around 1 I told my boss I needed to go speak with a doctor I mean they had to understand I had a baby in the intensive care unit. He said it was fine and I left at 2. When I got there Mason was doing really well, his gases were good and he had now been on the regular conventional ventilator for 2 days. When I arrived we chatted and she prepared for touch time. As I got his diaper and everything ready she came in his room and was like so are you ready? I'm like ready for what? She replied she had talked to the doctor and asked if a baby with MRSA could be held skin to skin since this was contact and he was in isolation and we had to gown. Then she told me the doctor had said YES!! and that I was going to do skin to skin TODAY!!! I had not picked a better day to leave work early. I had been waiting for this day for 5 weeks! I got so excited I told her I was going to go to the restroom so I didn't have to go in the middle of holding him. I of course immediately called Louis, I told him I was about to hold Mason he seemed excited but he did not offer to leave home and come over which bummed me out a little. I didn't care though I was gonna hold my baby, I was going to take him out of his incubator for the first time in 5 weeks. I couldn't wait for him to be laying on my chest. We weren't aloud to have our cell phones on so of course I turned it down and was ready for my baby. I came back and Jenna got everything ready, I held him for 3 hours that day just talking to him. Jenna actually took a bunch of pictures of us with a disposable camera I had in his Incubator that I would take a daily picture of Mason with. I talked to him and he fell right to sleep, She actually kept turning his O2 down because he was so comfortable he was breathing really good, He went down to almost room air. It was the best feeling in the world and I was totally in love. I did not want to let go of him. Although it was uncomfortable to sit in a regular chair for 3 hours I did not care as long as I had him near me. Other than his birth this was one of the best days of my life. I held him until shift change when I had to leave, I went downstairs to the cafeteria and waited till 7:30. and went of to my usual night. I came home and slept wonderful that night.The next day I of course wished I could leave work to hold him again but I did have responsibility's and Jenna told me she would write a note so that night shift nurses could let me hold him aswell. They upped his feedings to 2mL every 3 hours and I got the news he was off soluf cortef! this meant he was on NO blood pressure medications. He was doing great! he was growing and he would soon be big enough to get his surgery!. This was Jan 13 & 14 and I got to hold my precious angel for the first time. 

DEC 9 & 10/ MASON HITS THE BIGGEST MILESTONES OF HIS LIFE, HE STARTS EATING AND GOES BACK TO CONVENTIONAL VENTILATOR

I woke up on Jan 9th feeling great it was Saturday, but not any ordinary Saturday. My baby was 1 whole month old! I couldn't believe it, I couldn’t believe he had been fighting for every breath for one whole month now, and things were looking great for him. I called early morning with my regular "Can I speak to the nurse taking care of baby boy Morales" The nurse just updated me on his night since I told her I would be in soon, She did tell me she had some great news for me when I arrived. This made me so anxious I rushed and showered and was ready before Louis!. I kept thinking to myself "what can it be?" could it be he is getting switched back to the regular conventional ventilator? Possible, "Could it be them starting feeds?" A mom could dream right? I kept beating myself up thinking of what it could be. I talked to Louis about it the whole way, I was scared this wasn't even going to be all that of good news but I had hope it was something BIG...something that said we are in the right direction and we are moving forward. When I arrived we did what we always did, signed in and scrubbed. Me and Louis had a routine; while I signed us in he would go get us pillow cases so we can put our sweaters and my purse. Hospitals are very dirty and contaminated with germs, let’s face it the people and babies that are there are there because they are sick. And I didn't want to take any extra germs into Mason's room. We would Gown up and wear gloves at all times when touching Mason since he was really prone to getting any type of infection. When I arrived the nurse filled me in, she started off by congratulating me. She said Mason is now 1 month old and that is a huge milestone, not many babies make it this far and I could tell he would make it as FAR. I of course told her thanks and that I was thrilled myself to have gotten this far with him despite of all his health issues, and of course him not eating. That's when she gave me the nicest smile I had seen a nurse give me yet. She said the doctor came in with cardiology and GI. They gave Mason the OK to start eating and I was waiting on you to help me hang up his first feed! My jaw dropped!! I felt like crying, and I hugged Louis instantly, this was such a huge deal for me. Mason eating meant he would become even stronger and be able to have some sort of immunity. She told me of course they would start off small. When I thought small I meant maybe 1 oz at a time but no we were starting off REALLY small and he would slowly work himself up to full feeds and when he did he would be able to be completely off TPN. When I asked her how small they were starting off they told me .5 CC's that’s HALF of a ML. If you know what .5 ml is then you can picture how small that is, I probably have more saliva in my mouth than they were feeding him, but it was a start! She told me they would up his feedings as long as he was tolerating it every other shift. That seemed more reasonable to me, if he would be increasing every 12hrs. Right now he was at .5 every 8 hours and by the end of the shift he would be at .5 every 6 hours until they got to every 3 hours then they would increase to 1mL. When I went in to see him and change his diaper I noticed an orange tube down his mouth, I knew this was his feeding tube. I just knew things were looking up for us and I could not be happier. She also told me that he had had a blood transfusion in the morning due to his Hematocrit level being low. But that it had helped a lot with blood gases and they were even thinking of taking his art line out. I was happy about that as it meant one less needle inside him. Then she told me his head US was due today and they had performed it early morning and that the results had just came in. I remember praying to God and telling him to not let that brain bleed get any worse. I had had nightmares about them telling me his grade 1 bleed had gone to a grade 4 and that my baby would more than likely be mentally challenged. Instead she smiled again and told me there was nothing visible anymore and that meant the bleed had resolved ITSELF...It was a miracle!!!!! We could not be happier with the news

When I went in on the 10th I immediately knew something was different, Jenna was there so she immediately filled me in. She told me she convinced the dr to switch em over to CONVENTIONAL!!! This meant no more ear muffs and less sedation! I was thrilled I had gotten so much good news in the last 2 days I could not help but wonder when the bad news was due. It seemed like we could not take one step forward in the NICU without taking 2 steps backwards. For now I was thrilled with the good news. She told me as long as he was stable on the regular vent that maybe I could hold him soon. This of course brought the biggest joy! And even tears of happiness came down my face. She told me that since he had such a big change they were going to keep his feedings the same for today to not push him so much. I thought that was a good idea, I didn’t like the fact that the Jet was still in his room just in case they had to put him back on it. I just wanted that thing out and my baby to never be on it again. When I pulled his blanket up I noticed he was on his tummy!! This was the first time he had ever been on his tummy! He looked so peaceful and was sleeping calmer than I had ever seen him. Jenna always did a great job at keeping his bed neat and not looking like a bunch of lines going everywhere like all the nurses tended to do. I spent the afternoon reading to him and probably took a million and one pictures but I just couldn’t help but love how he looked this was Jan 9 & 10 and the best days in Masons life yet =).

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.