DEC 26, LOUIS GETS MASONS NAME TATTOO'D

It’s the day after Christmas, It has been really cold out and it sometimes makes me wonder how my precious child is doing. Is he cold? Is he scared? Does he feel alone? Is he feeling pain? All those things kept running through my head and it made me sad, sad to the point where I would break down constantly and bury myself in my pity. But then I would think of him and how strong he was being and it just gave me massive strength. Louis told me he wanted to go get his babies named tattoo. This was huge to me as this was OUR son and he was now going to have him on him forever. We planned to go visit first and then go get the tattoo. But like every time Louis went this was going to be a short visit and it was. All I got out of the nurse was his gases had been acceptable through the day and they had not weaned on his vent. They were noticing a decrease in his LE BP so they were debating going up on his Dopamine again. I started getting a little concerned so I asked if they had ordered an Echo. She told me they had and that it was scheduled for later in the afternoon. I asked if they had gone back up on the PGE and she told me they were debating going up on that too and were going to wait for the Echo results. If it showed a smaller PDA then they would increase if not they wouldn’t. These setbacks bothered me a lot but I knew Mason was fighting and it wasn’t his fault he couldn’t control these things. He was doing more than he should have been and as long as he was ok I didn’t mind going backwards a few times. Today wasn’t the best day but it wasn’t the worst. It is Dec 26 and Mason survived his first Christmas

 

DEC 25, MASON'S FIRST CHRISTMAS

Today Was Masons first Christmas and although he wasn’t home we were still so thankful to have him. Me and Louis agreed to go see him early morning so that we could have the rest of the day to spend with family. We opened some gifts in the morning and my little sisters opened there "Santa" gifts. I noticed a HUGE truck under the tree, When I got closer I noticed it said to Mason from Santa. I knew my dad had gotten him the truck, we have that truck in the garage and my dad says it will always be Masons. After realizing Mason had something under the tree I just couldn’t help to think about next Christmas and how he would be here opening his gifts on Christmas morning. When we arrived his nurse told me about his weight. He had lost about 55 grams. She didn’t seem concerned and she told me the doctor wasn’t concerned either so I wasn’t going to worry. It was Christmas and I was going to have a good time with my son. Every time I went with Louis it was short visits because Louis was a busy guy. I wasn’t working or going to school so I had all the time in the world to be with my son. He wasn’t doing better but he wasn’t doing worst, but there was really no changes. We spent our time reading him a Christmas story but due to him being sedated he was asleep most of the time. He would also respond to stimulation and he would sometimes desat if we touched a lot so we only touched when we felt it was safe. I always kept my hand on his little head, I have small hands and his tiny head fit perfectly in my hand. I got him another lovie as well it was the only gift I could leave with him. I made sure to sleep with it the night before. I had fallen in love with this little human being; I loved him more than I ever thought I'd love someone. He was MY son, I created him and it was the best feeling in the world. This was the best Christmas and will continue to be the best Christmas of my life. My baby is 16 days old, today is Christmas and life could not be better. 

 

DEC 24, CHRISTMAS EVE

It was now Christmas Eve, My first and only Charismas Eve as a mother. And just as any mother I woke up worried for my baby’s life. I called for an update and started wrapping my gifts. I have always been the type to leave all Christmas things for the last minute and I always wrap presents on Christmas Eve. I helped my mom with some of the food. Christmas was always held at my moms, my whole family comes down on Christmas Eve and we have Dinner and presents at my house. I did everything I had to do at home and I told myself I would go spend some time with my son. Louis was working and we had dinner at both mine and his house so my day was tight. When I went in his nurse told me they had weighed him the night before and he had gained half an oz. That was huge for me as Mason had been having only gram increases and for it to go to a half oz was a big step for me. She also told me they tried going down on the dopamine to 7mcg but that they had increased it back to 8 due to his LE BP decreasing a little. I also noticed that on all his records they started putting Mason as oppose to only "Baby Boy Morales" I loved that. I also loved that they planned his next US for weeks in advanced it was planned for sometime in Jan. I wasn’t even thinking about January and he already had things planned for it. He was still on the Jet and still very sedated. They weren’t going to wean on sedation until he got of the high frequency went and I felt like that might take forever. They did tell me that his Urologist gave him the OK to eat so now it was all up to Cardiology!!!! that was the best Christmas gift I could have ever gotten...I knew Cardiology had said that as long as the Urologist gave the ok it was fine with them as long as he was off all pressers and we were getting there. When the NICU resident told me that my baby would probably not eat for months I believed him and then I realized those doctors COULD and WERE wrong and Mason could probably eat any day. Everything was coming along...Slowly but surely. With minor setbacks here and there but we were being totally patient. Today was Christmas Eve and Mason was fighting for life!

DEC 23, CHRISTMAS EVE, EVE

It was the day before Christmas Eve, and I couldn’t be more thankful. I had been having dreams of someone telling me I shouldn’t loose hope. I think it was because it was close to Christmas and I would see Angels everywhere. Not only till now do I realize how many Angels there is around Christmas time. Regardless of being recovering from surgery I took time out of my day to go buy some gifts for my family and a little gift for my boy. We got him a toy guitar that made noises, and some blankets and clothes. It was so cool to be able to shop for my already here baby, for a while I was dazed and just wanted to buy things for when he came home although that was such a long time away(never had I imagined he would never come home) I bought a lot of things that Christmas for Mason. Of course I couldn’t take them all to him as he had very minimal space in that room. I took him a Christmas book, Another Stocking and his grandma my husband’s mom took him his first "My first Christmas" Teddy. When I arrived his nurse told me they had gone down to 8mcg on the dopamine. This was a big thing for me as we were getting close to shutting the dopamine off. We were already off the Epi so once we were off Dopamine we would be off pressers and we could maybe start feeds. Feeds was a big thing for me, I felt that as soon as Mason got my milk he would just grow stronger, I just wanted him to eat so bad. Eating meant weight gain! And that was our priority; I just wanted Mason to get to the goal weight to get his little heart fixed. He was still on the jet vent but was making some progress. His blood gases had been ok throughout the day. He had been having some Desaturation spells so they put him on Caffeine. This would remind his brain to breath. I didn't like Desat's they scared the heck out of me at first. The machine would go off and they would immediately go in and touch your baby to startle him so he can breathe. They weren’t frequent spells but even then I was still scared. Mason was now stable enough to weigh again. To my surprise he was now 2lbs 7 oz. That was a big difference, but then again he had not been weighed in a few days. The nurse did tell me he would more than likely lose some with the Lasix he was scheduled to get. Today was Dec 23 and Mason is now officially 2 weeks old! 30 weeks corrected age!

DEC 22/ MASON IS 2 WEEKS OLD.

Me and Louis woke up and got ready. We kind of had built a routine of what we did the days he had off. We would wake up get ready go eat breakfast then head over to Millers. We got to the NICU we scrubbed and went over to go see Mason. I wasn’t surprised that he still had his Santa hat on, I told the nurse to pass it on that I wanted them to keep it on..It was really soft and he seemed comfortable with it instead of the regular hats which were very big on him. The nurse agreed and said she would pass it on. She informed me that they had gone down on his pressers, they had turned off the Epi and they were weaning accordingly on the Dopamine. I remember telling Louis, The new medication he’s on is really working miracles. Here was my baby almost dying and they were already giving him all they could give him and this one medication took the job of 2 and was doing a wonderful job not to mention this was a dose medication and the pressers were continously.He went from 18 mcg to 11 in 1 day and for Mason that was almost impossible.  I couldn’t wait for Mason to spend his first Christmas with us. Although he wasn’t home I was so grateful to have him. Things were looking better Mason was tolerating a little more touch so I would put my hand over his head and leave it there for hours. While I was there they came in to do a follow up head ultrasound which still showed a possible grade 1 bleed. The doctor just told me would do a follow up the next day. They also told me they would do a follow up echo in a week. I don’t know why but I really liked when doctors told me plans they had for a week ahead because they were confident Mason would be with us another week to make plans. Mason held my hand most of our visit. I was continuing to pump ever 6 hours despite the fact that Mason was not eating; I was starting to get a little discouraged. I didn’t feel like I was wasting my time because I knew how important this was to Mason but I couldn’t help but think what if he never gets this and I am working so hard for it  But I continued anyways,because the doctor told me that as soon as he was off pressers he would start trying feeds. As of now he was receiving TPN and lipids which were helping him put on a little weight, He was still really skinny. I felt like it was going to take forever for him to get to a real size baby or at least 6 lbs, But then again I still had 2 months and a half till my due date. Mason was supposed to be born in March, but he was now the only family member with a birthday in Dec other than my big sister who passed away as a baby. My baby is 2 weeks old today, Its Dec 22 and Mason is 30 weeks Gestation.

DEC 21/ WE GET RESULTS FROM THE CHROMOSOME TESTS.

Today when I got in my baby was still wearing his santa hat! The nurse said it looked really cute plus it was holding down the earmuffs real good so she decided to keep it on. I didnt mind at all since he did look really cute in it. The first thing I noticed was a cast like object on his tiny hand, then i quickly realized his unbillical lines were out so they probably put in a PICC or ART line. Jenna was in today, I loved when Jenna took care of him because I didnt feel so weird asking all these questions. It was the reason I fell in love with her(Later on in masons life Louis actually starts calling her my gf!) She was always very good at responding my questions and I felt a lot more secure. She was also super positive about everything and was the first to inform me when Mason was meeting some of his goals, or he had a good blood gas which were all big milestones for us. My baby was now pretty much 2 weeks old and I had still yet to hold him. I would dream about the day I could finally hold my precious boy in my arms. I wanted to pick him up from that bed that didnt look so comfortable. I had made it a habbit that as soon as I got to his bedside the first thing I did was clean his little mouth with towlettes. He was on the high frequency vent which made his saliva build up then dry on his poor baby lips. I would also put his lovey inside my shirt as soon as I got their. Jenna had great news for me, Mason's chromosome tests all came back negative. Mason was fine! he didn't have any genetic defects which was something huge to me, I thanked God for letting Mason have a normal life despite everything he was going through. He would grow up and be a regular boy..... I was on cloud 9 that day, suddenly everything was looking good and although Mason had a blood transfussion and they went up a little on his pressers he was doing good and it meant the world to me. At this point I had been crying myself to sleep everynight. I felt strong and like I could do this but there was just something about knowing your baby is in a hospital all alone and probably scared and in pain and Im here at home..It just killed me. But that night, I didnt cry and I told myself everything was going to be ok.Today was Dec 21 and Mason doesnt have genetic problems

DEC 20 MASON GETS HIS "FIRST" PICTURE WITH SANTA

Today I was really excited to get to the NICU because Mason was going to take his first picture with Santa, My mom and my dad came along. Louis had work so he obviously missed an event that was really important to me. I was bothered but I made the best of it, I and his grandparents would be there for his first and only picture with Santa. When I got in they informed me that Mason’s room was going to be the first to be photographed. At around 11am Santa and a representative from the March of dimes came in and gave me a little hand knit Christmas hat. It was the tiniest thing I had ever seen and it amazingly fit perfectly and the best thing of all is we got to keep them. As you remember Mason wasn't tolerating touch much so opening his issolette and putting a hat on him and moving him around was going to be a little difficult. I remember seeing the little girl next to mason she was a lot smaller around 1lb and 5 oz but she was doing so great she was on a CPAP machine so her parents picked her up and put her inside a stocking and photographed her. It was a really beautiful picture. Unfortunately since Mason was intubated we couldn't move him as easily, especially since he was on the JET vent. Either way I was determined to get a good picture, they took some pictures of him alone and then they took one of me my dad and him and me my mom and him. He tolerated it pretty well which made it so much better. I was scared I would agitate him for trying to take a picture. I will cherish that Santa hat as well as those pictures and my memories forever. I feel so blessed to have witnessed this day. And that God allowed me to get some pictures of my baby around his first Christmas. Today is Dec 20 and Mason took his first and only last picture with Santa.