Mason Maxwell Quevedo

MAY 16 THROUGH MAY 20.. MASON TAKES ONE STEP FORWARD AND TWO STEPS BACK

2011-08-27T15:12:00.000-07:00

Mason continued to be well enough for me to carry him, on the 16th I was able to hold him for about an hour. He did start getting a little aggitated so we put him back down. They continued to increase his feeds and decrease his ventilator settings. It's kind of crazy how things could go from being stable to being critical.

The next morning when I called in for an update I wasn't really ready to hear that Mason was up to 100% his blood gases were going south and he needed to be placed on a high frequency ventilator...Here we were taking another 5 steps back. I remember asking God when this was going to end, for once in these 150 something days I was finally at my breaking point...How much more of this can we take, he gets better..he gets worse...I told God I couldn't do it anymore and that is something ill never forgive myself for even thinking, let alone screaming it out loud. I had been keeping composure for so long, trying to be strong...as strong as this little boy was being but I just was loosing all hope that I could one day raise my child. As soon as I went in that day I called his doctor to speak with him about the Trach. It was obviously something he needed and IMMEDIATELY! but would the surgeon go on with the procedure although Mason wasn't doing so well and on a high frequency?? I started writing down all the questions I had for the EENT.

His vent settings were going up, but why? later that day I found out it was not only an infection that was causing this but it was sepsis, an infection in the blood stream. We started realizing that Mason was worse off being in a hospital , he was being susceptible to all the nocosomial infections Hospitals carry. His poor immune system could hardly fight them. He was of course immediately started on antibiotics.

I met with the EENT and she told me she wouldn't be able to do anything until he was clear from infection but we did discuss maybe putting in Masons Gtube and possibly removing a hernia he had all at once just so that he didn't have to go through many different surgeries. She told me I had to get it cleared by his primary and by cardiology. I met with his doctors and they told me it was all up to Cardiology.

By the 18th Mason was actually getting better, his blood gases were starting to improve and his ventilator settings were going down too. I was starting to get a little more hopeful about actually going through with the surgery and finally getting over this pulmonary hypertension problem and finally get rid of being intubated. We scheduled the surgery for Friday May 28th. I frankly could not wait..This was the final step to finally being able to bring Mason home. Just 10 more days and we can finally move on..I couldn't wait.

I could tell he was starting to feel better because he was starting to become active again. He always spent a lot of time kicking his legs but when he didn't feel good he would sleep most of the day. On the 19th Mason was switched from a high frequency vent back to a regular vent and restarted on his PO medications. I felt horrible for doubting in God like that...I remember going to the chapel that night and really asking for forgiveness, he had once proven me wrong...Everything was falling into place again. And we were back on track....or so we thought.

MAY 1 TO MAY 15/ CHYLOTHORAX IS RESOLVED CHEST TUBES COME OFF AND I SPEND MY FIRST MOTHERS DAY WITH HIM

2011-08-11T00:08:00.000-07:00

Mason continued to be on the road to recovery, I didn't know how it was possible really. My baby had just overcome not only a Chylothorax but a Pneumothorax which both together alone should have killed him. One of the nurses had told be a few days back that they had never had a baby survive a Chylo, that was when I pretty much lost hope. Although Mason would constantly get critically ill for some odd reason I was never too alarmed, I guess because he had overcome so much that I thought he was capable of anything. But this last time, when I saw all the drainage I just didn't think he'd survive. But here we were, once again on our way back to actually taking steps forward. They continued to lower Mason's respiratory settings which was always a good sign. He was still on a high frequency ventilator but was on much lower settings, low enough that they could possibly change him over to a conventional ventilator any day now.

On May 3rd they ordered an Echo just to make sure that his pulmonary hypertension was under control throughout all the mayhem he had been through the last 2 weeks. He still had one chest tube but it was practically not draining anything, maybe a cc an hour. I emailed Dr B to ask if he would do an Xray before removing that chest tube. He said said he would order it and come see Mason the following day.

The following day Dr B came in and took the second chest tube off. He also discontinued the Octreotide. This was a huge deal for us, I didn't know how to thank this doctor who had saved my babies life plenty of times before. He told me he would continue to monitor him. I couldn't hold Mason on a Osscilator (high frequency vent) because it was giving him too much pressure to move him, But I could hold him once he was switched over to the conventional. Little did I know that they were going to switch them over that night. Part of me felt a little hesitant, what if this was pushing him too much too fast. After all he had just gotten through a lot. But Doctors knew best and I always put my thrust in the team I picked out for Mason. His first blood gas which checked his respiratory status, was good. I was a bit relieved and very surprised that even after all of this Mason was requiring very minimal blood pressure support.

The days went by and Mason seemed to be on the right track, by May 10th which was my first Mothers day with my child, I was able to actually hold Mason I spent some time at a BBQ we had with my mom at home and at around 2 I headed to Millers. As soon as I got there me and Jenna started his feed and we prepared for me to hold him. I remember holding him for 2 hours straight, until my arms pretty much gave up. I loved cherishing moments like that with him, he fell sound asleep.

The next day Mason decided to extubate so they tried him on CPAP but he did not tolerate it so they re intubated him and we started discussing a trach. At this point we were pretty certain that Mason was going to need additional breathing help for a while, he had just endured too much damage with all those extubations that it was going to take a while for his lungs to recover and a trach was probably the best decision for him. The next day his dad came and visited with me and he got to hold Mason for probably the 3rd or 4th time in Masons life, Louis was afraid of carrying Mason so he hardly ever did, I was the one who would hold him and he would just watch. At this point I was working from 8-2 and then visiting Mason the rest of the day. It was much better than working 8-6 and then visiting Mason until 10 pm. Those days were very long and very draining. I would constantly argue with him and ask him why this was all put in my hands, Before Mason I had no medical experience everything I knew was because i was on top of his care. But I was literally the one in charge of making every life changing decision and it bothered me a lot. We were supposed to be a team and he was supposed to help with everything, not just be there. That day Louis held Mason for a while, the longest Louis had probably ever held him; it would also be the last.

I wanted to see what was next in Masons care plan so I arranged a meeting with his Doctors. We discussed how evidently Mason was not succeeding at extubating and that we needed to come up with a better solution. We discussed the Trach and agreed that i would go meet with the ENT (ears nose and throat). In the meanwhile they were increasing his feeds and lowering his vent settings.This was the first 2 weeks of May and we were not prepared for what was about to happen.

APRIL 16 TO APRIL 30/ MASON GOES DOWNHILL, GETS BABTIZED AND WE ARE ASKED TO TAKE HIM OFF LIFE SUPPORT

2011-05-26T22:41:00.000-07:00

Mason continued to be unstable, he was NPO which meant he was not doing well at all, I hated these times. Not only was he dealing with those 2 chest tubes draining but he got a very bad infection. The infection started out in his urine but they started suspecting that his PICC line was infected. Without his PICC there was no way they could administer medication, we basically could not have an infected PICC it could be very dangerous as putting a new one in was not easy with Mason. His respiratory status was improving a bit but he was still draining about 290cc's, he was draining so much that they had to change the pediatric suction tubes to adult ones since they were replacing then very frequently. I did not understand why this was happening, I was confused did Dr. B not go in there to close the duct that was leaking all this fluid? I was so worried that I had to contact Dr.B myself. I went out of my way to email him I did not think I would get a response I emailed him on the 16th, 2 days went by and on the 19th I got a response back. He had a way of just calming me down, he didn't know just how much I trusted him. He always knew what to say, This was the response I got which made perfect sense. As you can see below Mason was very swollen.

Although I had heard from Dr. B I asked my social worker Jennifer who was always so great at helping me plan meetings with Masons doctors if she could schedule a meeting. I knew we were dealing with the chylothorax but this was something we might be dealing with for weeks. I wanted to start addressing Masons other problems. She actually managed to get me a meeting with Dr Strout, the head chief of the NICU. Yea he has a high position but had this Dr been following my babies care? We discussed some things with his cardiologist about discontinuing the INO and starting him back on Viagra. The only reason why Mason was on INO (Inhaled Nitric Oxide) was because he was NPO and Viagra was a PO medication. Once we could restart Mason on PO meds he could come off the INO. He agreed that as long as no residual was coming out of his repogle that they could try it. That's when this Dr gave me his opinion, he told me something I will never ever forget. He told me that I needed to start re-evaluating what I wanted to do for Masons life, and that there was going to be a time where they were not "Doing things for Mason, But just doing thing to Mason" and that I should consider taking him off life support. I was so offended, did this Dr not know how hard my baby had been fighting the last 4 months? Did he not know everything he had endured to that day? Did he not know that Mason had proved all the Miller Children's Dr's wrong? They have always questioned Mason and he has always proved them wrong..Why should I give up now cause some Dr that happens to run the NICU tells me too? I politely declined and the meeting ended. I stated my feelings to Masons primary as well to my social worker. I decided that day that I was going to stay with Mason, So I told the social worker to get me a family room....I was not leaving.

Mason was draining less which kept me so optimistic, Although everyone even his primary had hinted that maybe I should consider my options I did not want to give up. I had no right to just end his life because I felt he wasn't going to make it. When Mason decided he wanted to give up he would do so on his own, meanwhile I was going to continue to fight along with him...I kept in close touch with Dr.B, he was the only one who seemed positive and on our side, but then again Dr. B was a heart and thoracic surgeon and Mason had other issues he wasn't really aware of. The draining was minimizing, it still had not stopped but it was decreasing. I continued to be optimistic until on the 22nd we found out he had an infection, not only a gram zero bacteria infection but a PICC line, this was bad news as Mason only had a few IV's and required a lot of medication. He was beginning to decline so bad they started him on Epi, debutamin,dopamin and soluf cortef all to help with his blood pressure. He was not only on all the medication they could give him for blood pressure support he was reaching the max on his respiratory support as well. I had been staying with my husband in a family room in the NICU and I was checking in frequently, I had a real bad feeling. On the 23rd Mason was really critical, so critical that I called for a priest to baptize him in case anything happened. With no one allowed but my parents we went ahead and baptized him and asked them to be the God parents, All I wanted was for Mason to get Gods blessing in case anything happened.

I talked to one of the doctors and he wasn't too sure Mason could survive this infection but that they were trying the strongest antibiotics. We continued to stay in the NICUcc's that was way to much for any baby. Those days were very awkward, nurses started giving me the vibe that I was doing something bad by keeping my baby alive like this. Many nurses would tell me they felt sad to take care of my son? really? well because your sad I'm not going to let my son just die if I didn't know myself that he could maybe get over this and recover. I made that very CLEAR to his doctors as well as his primary. Jenna was a blessing from above, if we were going to continue fighting so was she, she contributed in every goal Mason met. We began to discuss a plan and we agreed that Mason needed a more stable central line. On the 27th I arranged another meeting to discuss the plan. Dr. B was at the conference which made me feel a lot better. We agreed that Dr. B would place a Jugular line on Mason to be able to get medications to him more effectively and quicker in case of emergency. We also agreed on Dr. B having to go yet again in to try and fix the chylothorax(the draining).On the 26th I went and got a tattoo, I just wanted to do it in his honor, I wanted to have him on me forever.

On the 27th Dr B placed a jugular line and immediately started octreotide (the medication to close the chylothorax) I was confident that by him getting it directly into his jugular it would make a better effect, Maybe I just wanted to reassure myself. I was doing countless of research and read that although it took some time this medication did work. Mason was draining so much that I was desperate for a solution, even if it meant him having to go into surgery again....I just knew we had to overcome this, we had come so far. The following day Mason drained 122cc's in 12 hours from both chest tubes, he was draining less and less...Was this a miracle? was he really getting better? or were the tubes just getting clogged(because they had gotten clogged in the past) I didn't get my hopes up, there was no way he could go from draining 300cc's to hardly nothing overnight. I began to worry so I emailed Dr. B

Once again, it was like this Dr was telling me everything I wanted to hear. He even agreed to order an Xray to check because I told him my concern about them being clogged. We had agreed on surgery the 29th if things were still bad but the 29th came and surgery got postponed. I couldn't believe it, we were actually getting over this.

Yes, we were on our way, It was a miracle and I happen to think that it had a lot to do with him getting babtized, he did not only get over Klebsiella a bacteria that should have killed him but his chylo was resolving. I felt beyond blessed. On April 30th one of the chest tubes came out....It was a great day, I was so proud, my baby was surviving after they pretty much assured me he was going to die. This was the 2nd half of April and we had just witnessed a miracle.

APRIL 1 TO APRIL 15/ MASON GOES BACK TO THE CARDIOLOGY OPERATING ROOM

2011-05-24T17:33:00.000-07:00

After having such wonderful 2 weeks I was not surprised that we had just taken 5 steps back as this was typical and anticipated with Mason. I knew this and I took advantage of everyday I had him nice and stable because I already knew things could change any day. Mason was now re intubated but was on low setting on the vent only 6 breaths per minute, he was still doing most of the work on his own but I did notice that his FIO2 was slowly increasing and this worried me. Every time Mason's oxygen had to go up without resolving it meant his pulmonary hypertension could get worse. He was really agitated I mean I'm sure he hated having that tube after having it off for 2 weeks I don't think anyone would appreciate that. His pain scores were going up and they were having to give him more rescue doses of his pain medications. On April 2nd I had a family conference with his doctors and the social workers t discuss what was going to happen. I met with his cardiologist who told me Dr. B wanted to do an exploratory Thorascope to see exactly what was obstructing his airway and depending on what how Mason did after the procedure we would re-evaluate Masons respiratory status, If not we would start discussing a Trach. I knew Dr. B would more than likely want to go ahead with the procedure soon, and once I spoke to him after the meeting he told me he would be going in the following day. I knew this was a surgery and every surgery had risks but I wasn't really too worried. I felt so horrible that my son had to endure yet another surgery but I had to be strong for my little man. The following morning Mason went in to have an exploratory thorascope to see what exactly was obstructing his airway. He made it out fine and only received a few boluses of blood pressure medication and he was back down to the NICU the following day. They once again placed a chest tube and began replacing with albumin what he was putting out, I hated seeing my baby all swollen and in pain, it just broke me down so bad.

Mason seemed to be recovering well from surgery, he was draining very little and Dr. B wasn't too concerned as long as we were replacing, by the 5th they had restarted his feeds. This was one thing I hated abut us taking steps back, we had already gotten to full feeds and we would have to start slow again but luckily not from the beginning they were starting at 10ml's over 3 hrs. This means he was getting about an oz every 3 hours which wasn't too bad. I had not been able to hold my baby since the 2nd when we had the family conference and before he was taken to the PICU for surgery and I was starting to get anxious. I knew I couldn't hold him while he had a chest tube, that would just be too painful. But he was waking up, although you can clearly tell he was in pain.

By the 7th Mason was getting worse, he began draining a lot of fluid from his chest tube, so much that they were not replacing it every 6 hrs but every 3 hrs. Once they talked to Dr B. He suggested to start Mason on a medication called Octreotide because he suspected Mason could have a Chylothorax since they sent the fluid he was draining to the lab and it came back with a high triglyceride level which meant it was coming from the thoracic duct. What most likely happened was that when he went in for the exploratory thorascope he probably punctured the thoracic duct which was now draining more than it should. I talked to Dr. B and he said that the octreotide would help close it without him having to go in but that this medication could take weeks to make a difference. He told me he would monitor him and in the worst scenario he would have to go in and do a thoracic duct ligation which meant yet another surgery.

By the 10th of April Mason went from draining about 40 to 50 cc's to about 200 cc's every 12 hours. They had already increased the chylothorax medication to the highest they could but it was not working, Mason was continuing to go downhill, On the 10th they placed him on a high frequency ventilator called an oscillator. This would help him breath as they wanted to keep him as comfortable as possible. We did not only have to worry about the chylo but also infections, he was susceptible to getting an ET infection a chest tube infection, a PICC or IV line infection. When his respiratory status went south we more than likely knew there was some sort of infection setting in so they immediately started him on antibiotics. The morning of the 13th Dr. B called me and told me he was going to take Mason up to the Cardiology unit to do the Thoracic ligation. I rushed to the hospital to see him before he went in yet again, this would be the 4th time they opened him up to see what was going on. Dr. B did the ligation and Mason returned with 2 chest tubes

When Mason came out of surgery he wasn't in a very stable condition, he was at 100% oxygen and his saturation's were not in the 90's where they wanted them so they started him on INO to help with his breathing as well as with the pulmonary hypertension. Because of all this Mason was diagnosed with Chronic Lung disease. This was a very tough time because he was already on ALL the support they could give him yet he would still desat requiring them to bag him manually. All this was very hard to take as I had never seen my baby in such a critical condition. This was when we had a nurse tell us that she would not keep her baby like this and would DC respiratory support. I was very angry at the fact that she "A NURSE" could give me such advice. The next day his primary was in and I discussed this with her and she was appalled since Mason was actually getting better, They had lowered his INO from 10 to 5 and his oxygen from 10% to 75% and his output was lowering. I was optimistic and was not going to give up on my baby just yet. Not even when they told me that NO baby had ever survived a chylothorax in their unit. This was the beginning of April, a very bad month for Mason.

March 15 to March 31/ MASON SUCCEEDS AT STAYING EXTUBATED

2011-05-23T18:51:00.000-07:00

On the Evening of March 14 I left my baby like this, intubated. He seemed a little agittated and was playing with his neobar a lot, I had a feeling he was going to extubate any day now. I tried calming him down and got a great picture of him (the picture that is now on his marker where he lays to rest) He looked so alive that day. The next morning I called in and to my surprise my boy had once again janked that tube out of his throat and was once again being tried on sipap. I was happy, this meant my boy would be happier without that tube and we were progressing towards getting out of here. Because now all we needed to leave was Mason to not be ventilator dependent and got his Gtube wich was an easy operation.

On the 15th me and Louis went to go see him. I was excited to hold him, I knew I would for sure be able to hold him because his primary was taking care of him that day. There wasnt a day where he was stable and she was there where she would not let me hold him. I did not only get to hold him but we bathe him and changed his ostomy bag. Jenna also talked to me about getting Mason into a big boy crib, I was so excited about this because it meant we would more than likely be able to dress him. I could not wait till the day where I can put some clothes on my baby boy. He had so much clothes at home but even if he was able to wear them none of them fit. He was still a tiny 5lb baby. I had to go out to Babies R us and get him some preemie clothing. I got him a few tiny onesies and some sheets for his new crib. We also went out and bought him a mobile so that he would have something to look at. This was a huge step for me and I could not wait.

you could tell Mason needed to be out of that incubator, he was getting so big. I can only imagine how bored he must of gotten of seeing the same picture of his mom and his dad. I couldnt wait until we could put him in a crib. I was having tons of fun being able to just pick him up when ever I wanted to. In the meanwhile, while they could find an extra crib for Masons room they improvided by keeping his incubator top open at all times so it was sort of like a crib.

Mason was doing so good ith his breathing that on the 18th they even tried him on nasal cannula again but that only lasted about 20 minutes, he was being given a lot of breathin treatments but maybe he just needed a little bit more time to get use to the breathing all on his own. His feeds were going great aswell, we had gone from feeding him over a period of 6 hours down to just 3 hours but he was now getting 20ml an hr that was 60ml together. This was the most he had ever been on, he was technically on "full feeds" his TPN was pretty much ready to be shut off and he was off lipids already. This meant he would start gaining weight at a much more rapid pace. On the 21st the March of dimes had scheduled our NICU to take pictures with the easter bunny, of course I was so excited to take any pictures of anything with my baby so me and my dad got up early that day (daddy had to work) and went up to the NICU to wait for the easter bunny. I made sure to dress Mason in green so he was matching for easter.

Since Mason was in Isolation you needed to gown up before entering his room, I kinda had a feeling this was going to be a problem when it came to taking the picture, we couldnt take him out and the rabbit wasnt going to gown up for the picture that didnt make sence so when it came to the actual picture we just had the photogropher come in and take a picture of him from the outside, I dont know if you can tell by the pictures but I was so upset at this I started crying. I got over it pretty quick as they tried to improvice as much as we could to get the bunny in the picture. It turned out in a very funny picture of Mason and the Easter bunny.

Mason continued to have good days, he was eating good and having faboulous blood gases which allowed the respiratory therapist to wean him on the sipap settings. On the morning of the 23rd when I called in Jenna picked up, she told me that she had gotten a crib for Mason aswell as a swing for him to lay in. I was so excited about this, not only is my baby going to be in a crib and I can pick him up when ever I want but I will be able to put him on a swing too!

This was the first time we ever got to dress Mason, it was preemie clothes and it was still a bit big on him. I loved being able to just take him out and dont let me start on the swing, I think it was because he wasnt compleatly laying down that he absolutely loved it. He loved it so much that his nurse left him the whole entire day, Im sure it was a big relief on his poor back that for the last 4 months had been sustaining him on his back. He looked so tiny on that swing but it was the cutest thing ever. We were having so much fun with all his progress and all the new things we were dealing with that we never thought that it could all go south within a few days. This was the longest Mason had ever lasted without being intubated it was a record braking 14 days that we had him on sipap and were able to just hold him. Little did we know that on the morning of the 28th when I walked in the NICU he would already be re-intubated and his doctors would already be talking about a possible surgery. I walked in to see them re intubating my baby and telling me that they had done a chest Xray and it had shown a possible tumor or "seroma" as they called it and that this was more than likely why Mason wasnt able to be discontinued from sipap. They called in Dr Bethencourt (his heart surgeon) to discuss what was going to be done about the seroma. They would more than likely have to cut him open to cut it out because it was obstructing his air way and that is why he was not able to compleatly breath on his own. Not only that but it was getting worse, so bad that they had to reintubate him. I went in to see my baby like this

It broke my heart to see my baby intubated again, knowing he would have to endure yet another surgery But we were not giving up we had been through way too much to let something like this bring us down, this was the last 2 weeks of March, Masons best days alive<3

March 1 to March 14 / MASON WORKING TOWARDS EXTUBATION

2011-05-17T16:23:00.000-07:00

It was now March, Mason had now reached his due date. He was no longer being counted as adjusted age he was now a full term baby! I had imagined me taking him home on his due date but we weren't quite close to that. I was beginning to get a little concerned so I arranged a meeting with his doctors. I wanted to know what the plan was, we had already tried extubating but apparently that was not working thats when they first introduced the idea for a tracheotomy. I have to admit I wasn't too thrilled with the idea, But this wasn't a for sure thing yet, we would continue to try and let Mason do it on his own before we agreed that a trach was the best option. I was ok with this but at the time I didnt know better, I trusted his doctors in wanting to give Mason another try. We would let him recover from the pulmonary edema and pulmonary hypertension and try another round of steroids to try and help him and see if that worked. On March 4th I was in a car accident, my car was hit from behind on the freeway and was tottled. This took a big toll on me as I now would be out of a car for at least a week. I needed my transportation to go see my baby but luckily I was fine and I managed to get around with either Louis' help or my moms. If I recall correctly March was the month where I started being able to bring people in to see him. I was ecstatic about this as I and my parents aswell as Louis had been the only ones able to see him. So I started bringing in my closest friends, I made the terrible mistake of not taking a picture with each person I took to visit him. I cant recall the dates but I can name on the top of my head who were the people I brought over to see him, My sister in law Lesslie was one of them, my friend Nancy, my friend Adilene, my friend Cindal, my friend Erica, My sister Katherine, He boyfriend Gil, My Sister in law Carmen, My aunt Alicia, My co worker David, My brother Erick and his wife and I believe that was it. Those people along with his parents and grandparents were the only ones who got to meet my precious boy. If I forgot to mention anyone I am truly sorry but those were all I could think at the top of my head.

By the time people got to actually come and see my baby he was passed the preemie stage and looked a lot more like a baby, I cant recall correctly but since cell phones weren't allowed in the NICU no one ever took pictures of him on there own except for my mother, my father and his dad's father who I remember clearly taking in a camera when he came in to see him. By March 6th my baby was 40 weeks 5 days gestation or 87 days old. And he was 5lbs and 5oz they only measured him once every 2 weeks so Im not real sure how long he was at this age. The first 2 weeks of March werent the best ones for Mason, he was being taken off really strong meds and was withdrawing real bad. He was not only on a lose dose of his fentanyl he was also on methadone and he had Ativan PRN. So he was still pretty sedated but they were working on weaning him off although he would get so aggitated, who could blame him though with that huge tube down his throat. By the 8th Mason was taking 11 ML for 6 hours straight then off 2 hours so he was taking 2 oz in a 6 hr period as well as TPN and lipids. He was tolerating feeds really well and was working on his way down the ventilator settings.

He had chest xrays done every other day and they were improving really well so we were once on our way back to trying to re-extubate and we were really positive about it this time. He would once more than a dose of surfactant and we would once again try...It was trial and error, we couldn't do anything but try. If we were not trying we were staying at the same place. Mason was now also started on a drug for his pulmonary hypertension, He was started on Viagra which I found out not only works for erectile dysfunction but aswll as pulmonary hypertension. It was a PO med so he would get it by mouth, it was working wonders because he was doing really well and lowering his vent settings by the day and getting closer to being able to extubate him. I loved that Mason wasnt getting poked every 3 hrs to get a blood gas they were now reading his end tittles on the CO2 machine to wean him on the vent. He was controlling his CO2 levels really well so there was no need for pocking very often which meant a very happy Mason.

we were once again back on track, the 2 remaining weeks were Mason's best weeks yet. This was March 1 to 14 and Mason was once again working towards getting extubated<3

FEB 7 TO FEB 28/ MASON RECOVERS WELL FROM SURGERY

2011-05-14T19:03:00.000-07:00

Mason was recovering really well from surgery, for the past week he had been draining extra fluid through his chest tube so they had been replacing it with albumin. He was having some fluid imbalances so they had to start replacing what he was draining. He had been switched from the high frequency to the regular ventilator but was still on Nitric Oxide to help with the mild pulmonary hypertension issue we were having as well. This was the first time Mason showed signs of pulmonary hypertension. It had been over 2 months and he had continuously been intubated. If there was something I couldn't wait for was for that tube to come out, he was sick of it and it hurt me so bad. He would constantly pull and yank it. It hurt to see my baby aggitated because he was in pain, other than an incision he had a chest tube..I don't know if you've ever had a chest tube but I hear it is one of the most painful things. They were doing a great job at keeping him relaxed and it took a few days but he slowly stopped draining and the chest tube came out, He seemed a lot happier once the chest tube came out, We were on the road to recovery from here.....On the 12th he extubated himself and for the first time they tried him on CPAP, he didn't tolerate it so he was intubated about 30 minutes later. When I heard this I was devastated, He wasn't ready what if he could never adjust? Was it because he was just recovering or was it because he needed another 2 months to try. If he didn't tolerate it now then when would he? was he still not fully recovered? After all it had only been 10 days after surgery. He needed a little more time. I had all the faith in the world in Mason. They were soon going to push him to try and extubate and if it didn't work than what would be next? They were slowly weening on his sedation and ventilator settings as he was able to tolerate. This meant he would have to wake up and try the breathing on his own, with no ventilator help. He had been NPO up until the 15th when they restarted his feeds. This was a huge step for us but we were going to have to start from the bottom and work ourselfs up. They would try and push him but would be cautious. His blood pressure was stable and he was off all pressors except for Soluf Cortef which he was receiving every 12 hours, they would wean that as he tolerated it too. He was restarted at 5ml for 6 hrs straight which is an oz given at 5ml an hr. He would get increased as he tolerated it.

The morning of the 15th I called Jenna in the morning and she told me that Mason had once again extubated and that she was trying him on nasal cannula and that he was tolerating it pretty well, he was keeping the desired saturations and he was only on 50% oxygen. I was more than thrilled to hear this but i asked her if she thought he would last. She told me we would wait and see but that he was going to get some help with a dose of stereroids. I was a little more convinced after I heard that he would be receiving help. She also told me that if he didnt tolerate cannula well there was always cpap and sipap which could be a little more easier on him but they wanted to push and see if he can just handle the cannula. I had never seen my baby off the ventilator and this got me so excited i left work early and told them I had to go talk to a doctor. I got to the hospital to see my baby's beautiful face for the first time with no tube.

The cannula only lasted 2 days by the 19th Mason had been placed on Sipap. Me and Jenna discussed it and we realized that Mason was going through a big change in sedation medication and he was slowly starting to do all the work himself breathing. Since he had been on medications that were really strong for a very long time his body was use to them and it was going to take a while for his body to slowly get use to it. Its like any drug you take, your body relapses after they just start taking it away. It got so bad he would get so aggitated that they decided to start him on methadone, we were getting rid of fentanyl but we would be introducing methadone. I knew it was going to be hard work to get Mason on the road to recovery but I never imagined it would be this hard. We literally took 1 step forward and then 3 steps back. I was enjoying the time that Mason was not intubated because I could just hold him when ever I wanted. The Sipap lasted till the 24th, Masons blood gases went so bad that they had to re intubate him.

I got to the hospital as soon as they were re intubating him so I got to talk to the doctor, he told us his chest Xray showed pulmonary edema and due to my baby looking so pale and tired they decided to to an echo which showed an enlarge heart, this could be due to him working so hard to breath on his own or the pulmonary edema. His tummy was also really bloated, they felt his stomach might need to be ventilated since he was on Sipap and Mason did not know how to control not sucking so much air in. All this together plus pulmonary hypertension resulted in him having to be re intubated. I had also talked to the GI surgeon which informed us Mason would not have his pull through during his hospital stay, they would wait atleast a year for him to get a little bigger and do it as an outpatient procedure.I didnt mind this at all, this meant I would take my baby home with a colostomy which I did not mind. I knew how to change it and care for it so it was not much of a big deal.

I knew it was a long road to recovery, but never imagined it to be so long. We still had a lot to come Mason was also full of surprises he could get better from being real sick, or get real sick after being compleatly fine. That was my boy, very unnexpected. He kept us on our toes his whole life, this was February and we were pretty much recovered from surgery.

Jan 30- Feb 6

2011-02-20T21:20:00.000-08:00

We were getting ready for the big day, the day you would finally get your surgery. A doctor came in to talk to me and told me a doctor named Daniel Bethencourt would be the one doing your surgery. I was anxious to meet this man. I had so many question written down for him he was probably going to flip. But I needed to make sure and be ready for any outcome although I was aware of the risks. On Jan 30 I knew we were getting close because they scheduled my first meeting with Bethencourt. As soon as I went home that night I started researching about this surgeon. I wanted to know all I could know about him. Where he went to school, where he graduated from, how reputable he was...EVERYTHING. I came home and found out the following through his website www. bethencourtgroup.com.

Daniel M Bethencourt, M.D., F.A.C.S.

Pre-Medical Education

Massachusetts Institute of Technology (MIT) 1975

Medical School

Yale Medical School 1979

Residency

General Surgery
University of Texas, Houston, 1979-1984
Cardio-Thoracic Surgery
University of California, Los Angeles, 1984-1987

Certification

American Board of Thoracic Surgery

Fellowships

American College of Surgeons
American College of Chest Physicians

That night was My baby shower. It was held at my Sister in Laws house, It was a great baby shower and I got so many nice things. It was nice that Louis's grandmother had came by, for the first time The Morales And the Quevedo family was all reunited. Due to some fucker stealing my camera that day, I have very little pictures of that day. He is clearly going to hell though.

The following day I looked and found so many great things about him, But nothing about operating on such a tiny baby. I mean he went to MIT and graduated from Yale but did that mean he could save my baby? We were going to fnd out. The Next morning he had scheduled to meet me at 11. I skiped work and decided I would take time to spend with my boy in the early morning. I had called in the morning to get an update and everything was going great. Mason was still toleraring feeds and was in a good mood, she even said I could possibly hold him if I wanted to. I got their around 9 am and spend time reading to my boy and taking lots of pictures. He was in such a good mood and I happened to have got one of the best pictures I have ever gotten of Mason. He kept smiling although he was still feeling a little sick. His CBC from that morning looked alright and he was almost done with his course of antibiotics. These were the pictures of that morning.

Dr ad asked me to meet him at Masons bed side so before I knew it, it was around 11:30 and he had not arrived. I asked the nurse that we had an appointment at 11 and that it had been past 30 minutes so if she could see what was going on and if he was still going to make it. She called and they informed her he had got caught up in a surgery but that he was on his way. Then nurse had previously told me that doctors were ALWAYS late. I never thought this was true until today, lol he showed up at like 5 to 12 and he apologized for the delay. He introduced herself and so did I, I asked him all my questions and he was VERY good about answering them and telling me the truth, I trusted him right off the bat, I knew he was the right person to do this surgery, How did I know?? I have no clue but he made me feel safe which is what I wanted in the end. Then he proceeded to tell me he would do surgery the following morning. My heart sank a little, does this mean I might loose my baby tommorow? If Mason did not survive this surgery this would be the last day I would spend with him. I wont lie I had a mini panic attack but he assured me he would try his best and that more than likely everything would be ok. I immediately called Louis and told him the news and we both agreed to spend the night before with him.I spent the whole night talking to Mason, I held him and told him he needed to be strong for momy and daddy. I could not bare the thought that thy would open him up and work on his tiny little heart but it was something that needed to be done. We kissed him so much that night, In a sence it felt like goodbyes and I cried before leaving him. I just wish I could camp by and sleep next to him...Just this one night. But we both needed our rest. It was the big Day tommorow and he was going to get transferred to the PICU at around 1am.

He was scheduled to go in at 8am. I woke up arond 6 got ready and headed to Long Beach. I went upstairs while Louis got some breakfast and ate it downsairs. I checked in and went up to the PICU...this was my first time ever at the PICU and it was much different that the NICU, he was with older kids. Some even around 14 or 15 years of age and that was weird since he had been sorrounded by babies this whole time. To my surprise Jenna showed up!!!! She was heaven sent! she had switched a shift so that she could be here for his surgery, not only would she help with recovery but she would be with him throughout his ENTIRE surgery which gave me so much peace of mind too. Mason had already been through a surgery before so the thought of him not waking up from Anesthesia was not wha scared me. It was them slicing him open on his side and opening him up to expose his tiny heart.Before we knew it I was walking with the Anesthesiologist, Jenna and the Respiratory therapist to the operating room. Although I could not be in surgery I could go all the way back to before the steril room was located to talk to the Anesthesiologist about any concerns I had. The chick was very subtle and told me that since he had a PICC line she would not need to poke him unless he required blood. We said our see you soon's and I kissed my baby boy goodbye

I had a major panic attack in the waiting room, I was so tired because I could not sleep the night before so I kept dosing off, thinking I was going to wake up and they were going to tell me my baby boy had died. I even had a little dream where that same scenario happened and I woke up panicked. It was the longest 2 hours of my entire life. Louis fell asleep as we waited too and I remember being awake for a while crying my eyes out thinking "How could he be asleep, she should be comforting me right now" But I managed on my own, Ask me how? I have no clue but I did. I walked up and down the cardiology unit, there was several people in the waiting room who were obviously waiting for there family members to also come out of surgery. This was when I lost it, a doctor came in and told a wife her husband had not made it. I ran to the bathroom and cried, as I was in the restroom I started feeling a little light headed. I sat on the toilet and calmed myself down a little and that is when out of the corner of my eye I saw like a foggy shadow, I quickly turned around and it was gone. I lost it once again thinking that might be Mason coming to say goodbye, I washed my face and in distraught went back out to the waiting room. About 5 minutes later Dr. Bethencourt walked in the room. My heart stopped and sank, he sat down and said everything went good (I started crying) He shook my hand and told me it was a though job and the thoughest part was closing his giant PDA but that he had gotten it done and it looked like it was good blood flow. My first question was can his coarc narrow again? He told me it was possible but very unlikely, but that when kids had this surgery so early on they were more than likely require a second surgery down the line. He told me he was gonna go close him up and that I can see him in the PICU where he would recover. I took a few breaths, and smiled and thanked God. Finally after 2 months of contemplating his surgery it was now over. We could finally move on, Me and Louis went downstairs to get something to drink and to call our parents while they finished everything up. Everyone was so relieved and thankful that all had gone alright. I then went back upstairs and waited for him. I wasn't prepared to see him like this...My poor baby, But I had to be strong for him

I stayed with him for the remainder of the day, PICU rules were a little different than NICU but I was managing. I made sure to have good contact with his nurses, he luckily got a really good nurse that was so positive with me. Mason had been put on dopamine and epinephrine again to help him regulate his blood pressure. I knew he was doing ok because he was still on the conventional ventilator and was not on a high frequency. I left that night around 10 because I was so tired. I told the nurse I would call throughout the night. Since PICU rules were different, anyone could visit without a parent. My dad stopped by after work and stayed with him till about 2am. I really appreciated that since it had been a really big day and I was tired aswell. The next morning I went in to work and told them I would leave around 12. At around 9 am I got a call from his nurse telling me he wasn't doing so well, Its surreal to think how quick things can go right downhill. She told me he had stopped urinating and that his blood pressure was going downhill. I told her I was just gonna finish some things at work and leave straight over. About 30 minutes later I get another call saying I needed to give a phone consent because he was going back into surgery. I broke down at work and dropped everything. My boss was around and he told me to just leave, I literally raced to the hospital and called Louis on the way. I was once again in the same position I was the day before but now with even less faith, how can my baby go through being sliced open TWICE. I felt like dying I was once more seeing myself in this place.

I had said goodbye to this place and thought I wouldnt be back but here I was not even 24 hours later. This procedure didn't take as long as Bethencourt came out pretty quick. He saw me sobbing and he opened his arms and said "Good News" I swear I fell in love with the man! He explained that the Aorta had somehow narrowed itself back up, But that this time he had taken an artery and had repaired it with that. He also told me that due to lack of blood flow due to the Aorta narrowing and there being no more PDA for blood flow his kidneys shut down and he had gone into Kidney failure so he had to place a parotoneal dyalisis but he assured me they would eventually start backup once adequate flow started flowing. These had been the most stressing 2 days of my life. He told me he was very confident that this time it would not narrow down and he gave me a 95% success rate which I was very happy with. He told me he would close him up and sent him back to recovery. This time he was placed on an osscilator. A higher frequency ventilator, It was sorta like the jet but for bigger kids I suppose. He did ok that night and they slowly started decreasing his BP meds. He was not only recovering from an incision on his left side, but also had a tube draining all his urine in his stomach and a chest tube draining all the additional blood from the surgery. My baby boy was going through a lot. And it hurt me....It hurt me like hell. I was just praying it would go uphill from here. Although he was going through a lot my boy was recovering like a champ. I was so proud of him

The next few days were all recovery, but it was going good he was recovering well and by the 6th he was off all BP meds, and close to him having the dyalisis taken away, as well as his chest tube since it wasn't draining much anymore. By the 6th he was sent down to the NICU since he was recovering well. This eased my mind a little. I knew recovery would take some time but I was confident everything was going to be ok. This was Jan 30 through the 6th, the hardest days of my life..........Yet

JAN 22-29 /A WEEK BEFORE MY LIFE SAVING SURGERY

2011-02-06T20:26:00.000-08:00

Mason was doing great, he was growing and getting so close to his surgery. I thought 1800 grams would never get here, remember he was only 850 when he was born but here he was getting oh so close. I had yet to talk to the surgeon who was going to to operate on him by the 22nd. I guess since it was still early and he was only about 1500 grams They wanted to wait until he got a little closer. I was still working and doing the night visits, Mason was actually getting pretty close on his vent settings to actually get extubated. I knew that wouldnt happen until after his surgery because he would be intubated for surgery anyways. By this point Mason was getting really good at extubating himself, He hated that tube and would pull it off any chance he got. He was also doing really good with his feedings and they were going up as he tolerated them. I was getting really nervous about the surgery that I was researching the internet most of my spare time. I couldn't really find much on a 3 kilo baby getting a coarc repair. I found a lot of stuff where babies didn't survive recovery which freaked me out so much. I know he needed this surgery and it was something that had to happen but he was doing so good. I wish I could of just gone through the surgery for him but reality was his little heart needed fixing and it needed it quick. by the 26th he was on 6ML of milk every 3 hours so he was getting a total of 40 ML a day which was a little more than an ounce plus TPN and lipids. They were lowering his calories and TPN intake as he progressed on his feeds. Jenna had informed me that he would be NPO for surgery and that after surgery they would more than likely restart his feeds from the beggining again which was a little frustrating because we had made so much progress but I guess they didn't want to push him after having such an invasive surgery as open heart surgery. By the 28th he was breathing room air which meant his ventilator was at 21% the whole time. He had also gotten an eye exam to check for ROP a condition that affected many preemies eye vision. Everything looked good and he wasnt scheduled for another eye exam for another month. It also terrified me that something could be wrong with Masons eyes and that he wouldnt be able to see. But luckily everything went good and the opthomologist was happy with his results. His lab results on the 26th were a little off his CBC was a little elevated so of course our first guess was infection. At this point I started hating hospitals for there nocosomial infections.He was started on vancomycin and tobramycin while they sent cultures to see what grew back. He was still on a very high dose of fentanyl just to keep him comfortable while he was on the vent. We were also having a little problem with his blood gases, his CO2 was a little elavated so they gave him a bolus of bicarb to help with that. He did well throughout the night. His blood gases always seemed to go bad when an infection was setting in. At this point I had made it really clear to all the nurses that they should be really cautious. not only because he had a lot of lines but also a PICC line that could easily get infected and would have to be removed. Also to be diligent about being really steril when it was time for tube change as that could easily set of an infection on such a succeptible host like Mason. They obviously knew all that but a lot of the nurses didn't use all universal precautions and didn't follow the hospitals protocol as they should and if I ever witnessed it I made sure it was addressed. After all this was my babies life on the line. When I had visitors which at this point could only be parents and grandparents I would also be really careful they of course had to scrub before going in but they would have to sanitize their hands everytime they wanted to touch Mason. I had to be really anal about all of this but infection was not our best friend and he seemed to come all to very often when it wasn't invited!! He wasn't tolerating Lasix well so they switched him over to Diuril a less potent diuretic. Other than that he was doing well enough for me to hold him. I was trying to take advantage of him being well and me being able to hold him and cherishing every second because I did not know what could happen the day of surgery. I knew the risks we were taking and I wanted to make sure my baby knew he was very much loved. This was week 22-29 a week before surgery, I didn't know it at the time but at 1715 grams we were very close to the 1800 goal so I knew it would come soon, My baby boy was growing<3

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

2011-01-27T19:36:00.000-08:00

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

2011-01-23T20:16:00.000-08:00

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

2011-01-15T12:38:00.000-08:00

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.

2011-01-15T10:58:00.000-08:00

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

2011-01-11T10:03:00.000-08:00

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

2011-01-09T13:00:00.000-08:00

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 =(

2011-01-09T11:59:00.000-08:00

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

2011-01-06T21:16:00.000-08:00

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.

2011-01-04T22:19:00.000-08:00

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

DEC 28 & Dec 29. MASON DEVELOPS A LIFE THREATNING INFECTION

2010-12-29T21:19:00.000-08:00

This infection was really taking a toll on Mason. They still didn’t know what type of infection it was but his urine culture did come back positive so we knew where the infection was taking place. The nurse told me that because of his mucous fistula (an opening) he would more than likely constantly get UTI’s and that she would talk to the doctor about having him on an ongoing antibiotic for that. Mason was requiring more help, his blood gases weren’t so good so they had to go up on a setting on his ventilator. He was beginning to become jaundice to the point where he might need to go under the Billi lights. They gave him some medication to try and avoid that. He was now back up o 13 mcg of Dopamine. When we had already gone down to 8, he was also started on a low dose of Epinephrine again as well. These last 2 days Mason has been back and forth and he was making some progress until this damn infection came along. They also started Mason on a solid dose of Lasix to help with the excess fluid. It was 3 days after Christmas and they had just taken Mason’s little Santa hat off. I helped the nurse change him to a regular hat. We also noticed his head had grown a bit and I realize in the pictures he is changing everyday he’s not only gaining weight but he is changing. Hair is falling off and he is starting to look a little different. He is 3 weeks old tomorrow and I can’t believe it, I still remember the first 24 hours and now we were going on 3 weeks. I had this big illusion that he would make the weight by the end of January and recover February to be home just in time for his due date. He was only about to be 31 weeks gestation so he still had 9 whole weeks till his due date. Although realistically I knew Mason could stay longer than March I got tired of people asking when he would be home so I just always answered “By his due date”. I never realized how bad of a setback an infection could be, Mason could survive all these surgeries and make it through all these days but a fucken infection could come and kill him at any time. From that point on I made sure Mason was protected I personally made sure to tell the nurses to use more precaution and I used much precaution myself. That’s when my addiction to hand sanitizer began, I haven’t been able to put down that bottle since. This would only be one of MANY of Mason’s infection episodes, Regardless of what we did we were in a hospital that was full of these bugs, and any of them could come attack my baby at any given time. I think that was my biggest fear, I needed Mason to start feeds so he could gain some immunity. I was still pumping in hopes that he would start feeding soon, it didn’t seem as it would happen but I had hope. Despite him fighting off an infection and being sedated he managed to wake up. Louis came along so we talked to him; we told him we needed him to be strong and keep fighting and that we would keep doing everything we could to help. We also told him how much he was loved and I held his precious hand as he started into my eyes. This was Dec 28 & 29 and Mason developed a life threatening infection.

DEC 27, MASON WAKES UP AND SMILES FOR MOMMA

2010-12-28T10:39:00.000-08:00

Mason was now 18 days old, because he wasn't eating he had only gained 7 ounces. And that itself could be excess fluid retained by his little heart. Mason was still on the jet ventilator but although he was hanging in there he was still sick, and today we got the news that he had gotten an infection. An infection doesn't seem like a big deal until you have a preemie fighting for his life with a suppressed immune system. My baby’s body was fighting staying alive and now it had to also fight off a bug that was taking advantage of this susceptible host. I never before realized how many infections and germs run around hospitals, I didn't realize that some babies there already had infections and that nurses could pass them along so easily. Although nurses took precautions nothing was ever positive. The reason why they decided to run a CBC on Mason was because he was requiring more medication. We had already gone down on the Dopamine to 8 and now we were up to 12 again. They did an Echo early morning to see if his PDA was still a moderate size. As you may know by now a PDA is hole in your heart that doesn't close after birth, in Mason's case his PDA needed to be kept open to allow perfusion through where his Coarctation wasn't. The narrowing in his Aorta is so small that the PDA is what’s allowing better blood flow. He was started on 2 antibiotics while they did some gram stains to check what antibiotic would work better on the certain bacteria he was being invaded by. I won’t lie, today was a scary day. But due to him being on antibiotics they took him off 1 sedative while they infused the antibiotic and he woke up while I was there, it was the greatest thing ever. He didn't only wake up but he looked around and he even smiled as I whispered "Baby Masssooooon! Momma is here to see you!!" I whispered that into his Isollette everyday for as long as he lived. This was my first time seeing him smile so much, it melted my heart. I have all this on video and will try to upload it tonight. He was still NPO and his CO2 levels went up due to his infection so they gave him a little more help today so he wouldn't struggle. I couldn't wait until he wasn't NPO anymore..That would be a big milestone. My baby was 18 days old and had not had one drop of milk, He was 18 days old and I had not held my baby not once, My baby was 18 days old and I had not heard a single cry from him...My baby was 18 days old and he was fighting for his life, He wasn't home and wasn't expected to be home for months...He still needed a heart surgery, to learn to breathe on his own and to start being fed but yet I still felt like the luckiest mother alive. He was mine, I was the lucky chosen to be this special boys momma, why me? Because I was capable of looking beyond all the wires and all this medical information thrown at me, I was able to understand it all yet not give a damn about it because all that mattered was my precious son. I told myself I wasn't going to be afraid, He was preparing me for what was ahead, and it would be him who would guide me.

First Christmas without Mason

2010-12-27T12:40:00.000-08:00

Christmas was nothing but an ordinary day with lots of shopping. I worked up until the 23rd and also had school so I didn't have time to do much shopping. I had told everyone I wasn't getting big gifts as I was donating money to a charity that since Mason was born has meant a lot to me because of all there help, The March Of Dimes. Of course my mother doesn't really get it, she thinks the rich people that have money should be the ones donating. Anyways Christmas Eve was pretty hectic although I did manage to finish everything by 2 and spend the whole rest of the day with my son. My little sisters kept me company because like a lot of other special occasions for me Louis had to work and I did not want to go alone. When I arrived at Mason's a lot of things were messed up. It had been raining to bad we put a little tarp on top of his things to avoid getting them ruined but that only helped so much. Since it was a sunny day I went ahead and took it off. We sat with Mason and organized his flowers, He had not had flowers for about a week so I decided to take him some for Christmas.I kept my cool while I was their, I had my glasses on so my little sisters didn't notice the tears. We read him some Christmas stories and played him some Christmas songs and we gave him his little gifts. we got him a little baseball because his daddy loves baseball, we got him a soccer ball because his grandpa loves soccer. I got him a little truck since me and my dad work at a trucking company, I got him a plane because his dads dream is to be a pilot and a little duck because his momma loves ducks! and a little dog=) they were all miniature little toys I got at party city for a quarter each. This is not how I wanted to be giving my baby his gifts but it would have to do. Everything was decorated so nice all the parents had come out to decorate there babies place and I loved it. It was the only time of yr we can do this and I was frankly getting use to it. I liked seeing Mason with a little fence decorated, I have always been jealous of the people that can do that all year!. I tried to make the best of all I had left of my son.

I felt horrible because the rain had been so bad that some of the markers to the right of Mason started sinking in. I couldn't imagine coming to visit my baby and his marker being fucked up like that, I think i might drop dead of a heart attack of the anger. Not only do we pay a lot of money for our plots and markers but we pay people to maintain them and the cementary isn't going to fix it??? I heard the parents made a complain but that they had not done much about it. I dont know I think I would of freaked. Me and my sisters walked around and finished soending time with Mason.

My little sisters insisted on making me laugh

Playing Christmas Carols for Mason

When all the kids started opening the gifts that night I couldn't bare it, It just hurt so much that I took off and cried in a lonely street alone in my car but my dad convinced me to come back. I tried enjoying it but it just wasnt the same. I lost all my Christmas spirit. The next morning on Christmas I spent some time with Louis and then took off, I just wanted to spend Christmas with my boy. There was lots of people when I got there, They gave me some hot choco and cookies I thought that was so generous. I laid my blanket and pillow and just laid down. I probably took a 30 min nap I got there around 2 and didn't leave till 6 so I spent quite some time reading to Mason and conversating with Masons neighbors and hearing there stories. Louis met up with me later that evening. and we spent the rest of our Christmas with our baby boy

DEC 26, LOUIS GETS MASONS NAME TATTOO'D

2010-12-27T00:11:00.000-08:00

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

2010-12-26T22:57:00.000-08:00

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

2010-12-26T21:52:00.000-08:00

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

2010-12-26T21:28:00.000-08:00

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!