So this is Christmas

Little Mason had his first Christmas here at the hospital with Mommy & Daddy. Since he tested positive for C Dif we have been confined to our room with no chance of parole until his 10 day antibiodics are up. Soon baby, soon. We have decorated Mason's room with a couple of stockings and a miniature tree and nativity scene. Grandma had bought him special Christmas pajamas which he wore on Christmas Eve and Christmas Day. He looked so cute! Santa Claus came by and took a picture with Mason and I and left several presents for him sometime during the night. At the Ronald McDonald house Mason received several presents as well. All in all, a good day.

Mason has had several rough days and the doctors were looking at everything possible to determine what could be wrong. He was finally diagnosed with having withdrawl symptoms and has now been put on a methadone wean. He is at an extremely small dose and will gradually receive less over the next several days. It is so amazing that he is now back to his normal cheery self. Apparently, his body was clamping down as those brain receptors needed to have some pain relief! Poor boy, he has worked so hard at getting better.

Today we went to another echocardiogram, which has shown some improvement in function. We also had another modified barium swallow study which Mason passed on thin liquids! Hurray!! We have now fed him a couple of ounces in his favorite bottle. He is just going to continue proving to us he can overcome anything.

Are you kidding me?

Little Mason has survived so much and has faced yet another challenge. Saturday we found out that part of his lung had collapsed due to the fact that the drainage tube pump had been disconnected and no one noticed. Fortunately, it popped right back up when the pump was started. Whew, another disaster averted-so wrong. By that evening Mason was having these fits of pain and kept waking from his sleep. The pain hit his body so horribly that he would wrythe around so much he turned himself sideways on the bed. The only thing that seemed to help him was fentenol, even though he had both Motrin and Tylenol around the clock. I asked the nurses who took care of him as well as one of the other nurses that were chatting with me if there was any relation to his pain and his lungs., Each one reassured me that No, there shouldn't be any pain from that. One of our nurses even told me that it appeared Mason was having withdrawl symptoms from his pain medications. She was in favor of him continuing them and then trying to taper them off. I had decided to go take care of some personal matters outside the hospital and found out when I returned that she had given him a dose of fentenol because he would not calm down. I even questioned his drop in o2 saturations during rounds and was told we shouldn't concentrate so much on numbers but on how Mason looks. Well, I totally agree if we were at home. In the hospital setting, I think there should be a whole lot more emphasis in analyzing those numbers.


We were somehow cleared to move up to 3 West Sunday night. Poor Mason started to be totally unconsoleable as soon as we arrived. More drugs....throughout the night his 02 levels continued to drop and the fellow on call arrived to check on him. At the time, Mason was peaceful and it didn't look like there was a problem. Wouldn't you know it! Fortunately, our nurses were persistent and asked him to check on him again. An xray was order for the morning and we continued to wait, console, give drugs until then. The first xray showed pneumothorax-liquid in the lungs. Soon after PA Quong came by and taped up the area around Mason's chest tube to make a tighter seal. The thought was that less air would escape and help fill the lung. Anothr xray a couple of hours later proved the entire right lung was now filled with fluid. This is known as a tension pneumothorax and one of the symptoms are these sharp pains. Is it possible that this mothers/woman's intuition is more accurate? I was so upset, I just couldn't believe that someone could not have caught this sooner. Someone should have monitored him more closely, especially since his lung had already collapsed once. Fello Teymour said since the taping didn't work we would have to replace the chest tube. Mason was then made NPO (no food) and we were set to go to the procedure room at CVICU. The NP, Kirsten, told me the procedure itself would be approx 10 minutes. For the second time, I heard those dreaded words, Parents sign the consent form and never think that those things can happen. Are you kidding me? Is this something I need to hear at this point???If we weren't headed down right at that moment I don't know what I would have said. I had reached the maximum. She also indicated she would find me once the procedure was done. Apparently, she forgot since I hung around outside the unit for over an hour when I saw Teymour, who told me everything looked fine and the xray was good. I went back with Heidi, our social worker, and saw Mason who was pretty uncomfortable. One of the fellows said that they inserted another line and that is actually what took the longest. Come on, someone do some follow up!
Another shocker came, when during rounds, the team was discussing Mason's severly dysfunctional ventricle. We went from moderate to severe in the same period? Who the heck is reading these things and who do I listen to? I asked to see Dr. Roth for clarification.
Before 4 or 5 pm the Director of Nurses came by and excused Dr. Roth for not being able to visit with me today but said he would stop by tomorrow. She said he had told her that there were several things I was concerned about and she was there to follow up. Wow, did I have a word or two about everything that had happend to us. While somewhat sypathetic, she did say that they were somewhat "trained" to say those things regarding consent. I made it clear that things should be said in another manner and especially at an appropriate time. In addition, I asked her to follow up with 2 other Moms, whom I know have had various other problems. Dale, Haley's mom even had a nurse laugh at the fact that her infant daughter's 02 stats were so low. She said she felt she could just kill someone and she asked another nurse to take over and she left the room. The Mom from Denmark is afraid/worried to leave her boy overnight and he is 15 or 16. Not a lot of confidence to be found around here right now. I was able to bring up several things such as the consent form comment, the complaints from nurses regarding the Massimo 02 sat probs, the concerns from Dale and Denmark family, the issue with the MRI an Mason not eating for 12 hours, etc. It was a regular gripe session, but it didn't make me feel any better.
As for Mason, he is currently peacefully resting and we have this tough boy another day! The kids left Sunday to Monterrey with Grandma and Malena and Michael is with Ernie at home. In the meantime, it is back to the hospital grind. Mommy staying nearby Mason and his crib. Oh we even have a private room-he has CiDif and is on contact precautions. Bet you don't here that too often. That is okay-almost every kid under 6 months carries this around and since he was tested for it and it showed up we got our our room-away from everyone else.
Okay, enough rambling and time for some sleep. Keep those prayers coming, Little Mason sure appreciates them. He sure knows he is wanted!

The Glenn

Wow, what a fitfull night it was. We were told yesterday that Mason was to be the first case today (Wednesday) for his surgery. We stayed with Mason most of the day yesterday and went to Ronald McDonald to rest for the night. We had asked what time we should be at the hospital in the morning and most people agreed about 6:30am. I woke up every hour and many times in between. The constant buzz of email coming in on Ernie's phone didn't help matters. Each time it buzzed I thought it was time to get up. I finally got up at 5:30 and got ready. We found Mason fast asleep on his stomach and freshly bathed for his surgery. The three of us enjoyed each others company for a couple of hours before he was taken up to surgery at 8:12 am. Dr. Jumba and Dr. Church, pediatric cardiology anesthesiologist's, wheeled him away.

Ernie and I waited in the parent lounge and snoozed off and on. We passed some of the time watching the construction workers caulk, cut JumboTex, and fit wire mesh outside the window. They were in no hurry, while we just couldn't wait to hear from Dr. Hanley. Around 1:30 we were informed Dr. Hanley would be coming out to speak to us. The feeling in my stomach was like a bunch of bees churning in their hive. When Dr. Hanley came in, he looked happy and left the door to the small waiting room open. This had to be a good sign and in fact it was. He told us that everything went well. Mason had his bi-directional Glenn and there was no need to do major work to his pulmonary artery. The shunt had been removed and the "tenting" that was observed resolved(layed flat) once the shunt was removed. He told us that he probed the pulmonary artery and it appeared all was fine-no narrowing. Little Mason did not have to go on heart-lung bypass (CPB)! We joined Mason on the floor approximately 50 minutes later, where we found him coming out of sedation. The nurse gave him morphine but it had virtually no effect on him. His sedative was increased and this helped make him comfortable. The majority of the day was spent weaning down his oxygen and medications for a quick extubation that evening. It was explained that patients do better after the Glenn if they are removed from the ventilator quickly. At approximately 8:10pm his breathing tube was removed and he was breathing on his own. Not happily, mind you. Although I don't know, it appears difficult to have to breathe on your own when you chest hurts and a machine has been trying to do it for you. It took some doses of pain Medication to help get Mason calm, which in turn helped him breathe better. This kid is so tough the morphine doesn't even phase him.

Dr. Maeda, the fellow, who cut Mason's aorta performed the initial chest opening again today. For several days after last Thursday he had been walking around with a rather sullen look. He often took time to console us, stopping by to check on us. I am sure he felt terrible over what occurred. When we all heard the results of the MRI were good news, it was like we all could breathe again. We have never felt any anger towards him and we genuinely like him a lot.

One of the anesthesiologists who took Mason in last Thursday stopped by the bedside to chat. He confided in us that the events that took place were very frightening. They did not hesitate to call for help and thank goodness everything worked out. He said it gave them all a good scare to say the least.

Overall, most people have been compassionate over what happened to Little Mason. So many have been happy to hear that he had made it through one more operation and have stopped by to say so. I did have a difficult moment when one of the NP's spoke to me yesterday and felt a need to go into CYA mode by pointing out that parents sign the consent form and hear about all the possible things that could happen but don't really think or understand that they could happen. This comment came after the current nurse Mason had was really being too aggressive in how she was handling him and I just about lost it. I had tears in my eyes and the NP came by to check on us, in turn we started talking about Mason's cardiac arrest event and I told her we didn't lack confidence but rather were a little afraid. She then proceeded to tell me that she had worked with Dr. Hanley and Dr. Reddy since 1992 and this had happened only about 3 other times-she said she may have added an extra to them. I expressed to her that Physician's Assistant Quong, had made it a point to explain how important it was to be careful at the chest opening, how this is what took so long and that we were disappointed that it happened then. She said, "But, we were careful." Well, obviously her careful and my careful are two different things. I really was upset that this had to be said. It took me most of the night to forget about it. Some people have foot in mouth disease at the worst time.

If all goes well, Mason may be moved to another less critical care floor tomorrow. Meanwhile, Ernie and I will go to RMH to get some rest and trust our nurse, Teagan, to take care of Mason tonight. We couldn't ask for a better nurse. Ernie leaves tomorrow, looks like we will be in the hospital for Christmas after all....

One Tough Cookie

As many of you know, Ernie, Mason and I traveled to Palo Alto, CA on December 4th for Mason's scheduled surgery, the Glenn. We had been told we would have a clinic visit on December 5th and therefore booked our tickets far in advance. We learned that this date had changed to the 8th but decided to go ahead and come out early. We enjoyed a couple of days of peacefulness and settled in to Ronald McDonald house once again.

On Tuesday, December 9th Mason underwent is catheritization surgery in which they were checking the pressures in his pulmonary artery and right ventricle. They looked good and everyone decided it was a go for his Glenn surgery that was scheduled for this surgery. In this next phase the blood returning from the head would be directed bi-directionally to both lungs where it would then pick up oxygen before being sent back to the right ventricle before being pumped out to the body. This was supposed to be the "easiest" of the 3 stage surgeries.

We were told that we were second in line for surgery on Thursday, which means that there would be a slim chance that he would get in. No big deal, as we were "seasoned" veterans to the surgery schedule and knew what to expect. Wednesday night around 9:00pm one of the surgical team members called us and told us we were moved up to first on the surgical schedule. Mason would be going in after all!

Thursday morning came and with complete confidence we walked Mason to the OR and turned him over to the cardiac anesthiosologist. We were expecting an approximate 4 -5 hour surgery and settled in to the new surgical waiting area. At approximately 12:00 pm we were told to expect Dr. Hanley to come down and speak with us in approximately 20 minutes. Upon his arrival he greeted us and then proceeded to take us to the "HIPPA" room where we sat down to await what we thought would be good news. Dr. Hanley began with stating that "We had to change the plan". I didn't think this was a big deal as Mason had demonstrated some tenting in his pulmunoary artery on his echo and I thought he would be discussing how they had to fix this a s well. Instead he shocked us by letting us know that while the fellow, Dr. Maeda, was entering Mason's heart his aorta was cut. They had to take immediate measures to save his life, which included placing him on the heart lung bypass machine and profuse him with blood. Dr. Hanley said he had been on his way down to speak with us when the immediately called him to the OR. He also stated that he thought Mason had been in this state for approximately 5 minutes and that he was extremely opptomistic that everything would be fine. He even said he thought they would be able to go back in and do the Glenn the next day. No, they didn't even do the surgery which was scheduled as they were too busy saving little Mason's life. We had previously been told by the physician's assistant, Dr. Quang, that entering the chest was a very critical procedure and this was undertaken with utmost care since the scar tissue is so close to the heart. The one thing that he stressed was what took so long to get into the chest and that was so critical was what went wrong.

After speaking with one of the nurses, Michelle, she understood that Mason's neo aorta was cut and then subsequently ruptured. Nevertheless, since this devasting event the plan for his surgery and care has changed several times. We will no longer have the surgery this week but instead will wait for and MRI on Monday to determine if there has been any damage to his brain. The Glenn surgery places more pressure on the brain as it changes the distribution of blood and therefore there is concern on whether or not to proceed with the Glenn right away.

Mason has proven that he is just a trooper. He was extubated at 6:05 pm last night and has been taken completely off of nasual canula oxygen today and is breathing room air. During his immediate post-operative stay he was taken completely off of all pain and paralytic medications to determine if he had movement and was acting like he should. Of course, this little boy did that-show them he is tough. When Carolyn from the chaplainship came in and annointed him with healing oil his body knew it was time and within a few minutes he began to move and open his eyes. This little boy has angels helping him through it all. Shortly after, his pain medications were then added back on in part. They have since started to wean him off of any continous medications and he is being given doses as needed. His feeding through the g-tube started with 3mls per hour at midnight on Friday and have increased to 30mls per hour continuously today.

That first day was completely draining and both Ernie and I feel our bodies totally drained. The stress has given us what no-work out could, complete utter exhaustion. Keep Mason in your prayers...he needs it now more than ever.

Mason is such a favorite around here and we have received all sorts of well wishes and words of encouragement. We know all those thoughts and prayers are helping him pull through.

Life in the fast lane

As you all know we were discharged from UNM back on October 15th. Since then it has been a blurr of feeding, meds, sleeping, staying up, not sleeping, running the kids to catechism, helping with homework, celebrating Jordyn's birthday, dealing with insurance, dealing with paperwork and a myriad of things related to just existing! Mason is doing just great! He is over 11 pounds now and his 02 levels remain around 84%. We are scheduled for his next surgery on December 11th. We will need to be in California by December 4th for his consult and catherization, prior to surgery.

I have a hard time believing he still needs another two surgeries. He looks just like any other baby, except for the scars and g-tube. On the 5th he received his Synagis shot. This helps to protect him against RSV, which is very prevalant in our area beginning in November. One of the nurses at Stanford told us the monthly shot cost is $1700.00. That is $1700.00 a shot! I haven't bothered to inquire if this is true, but I don't doubt it. We requested a summary of charges upon our discharge from Stanford and they were over $1 million. That was even before the medical transport to UNM. He truly is our million dollar baby.

Mason really doesn't require too many medications but it is a little challenging to make sure he has them at the right times. They are as follows:
8:00 am Captopril/Reglan
10:00 am Lasix/Prevacid
4:00 pm Captopril/Reglan
10:00 pm Lasix/Prevacid/Aspirin
12:00 pm Captopril/Reglan

There is only one pharmacy in town that can provide his meds, Silver Rexall. I didn't even know this pharmacy existed, but thank God it does. Ernie is in charge of dispensing/preparing all the mediations and I am in charge of dosing Mason. They all go through his g-tube, which is the best benefit of having the g-tube. I don't think I could have imagined saying that before! Regarding his feeding schedule, he is currently feeding for 2+ hours and has an approximate 45 minute break. We have a mini backpack with a small pump which we can carry anywhere, this allows us to take him along even while feeding. Of course, we limit his visits out to stay away from all those germs!

Our last visit to UNM on 10/24 went very well. Mason looked great and doesn't need to be seen until later this month. He has two separate appts, one with the GI doc and the other with the cardiologist. These visits to Albuquerque are a bit costly but we simply don't have a choice since he needs the specialty care.

Our local pediatrician, Dr. Etheridge, had scheduled home health visits for twice a week. I let him know after the first 2 weeks that this was not necessary since the nurse was just repeating everything I had been doing on a daily basis. That is weight and 02 levels. We are enrolled in the home monitoring program at Stanford and therefore I have been keeping track of this data to provide to them on their weekly call. As I mentioned before, it is critical that he gain an appropriate amount of weight before the next surgery. It looks good so far.

The kids just adore their baby brother. Jordyn keeps asking why a baby so cute and sweet as Mason had to have heart surgery. Of course, there isn't an answer but we have long ago stopped wondering why. Actually, I'm not so sure I even remember asking why but asked God to help us through instead. At least, that is what I recall now and it seems like a great plan for the future.

Mason's Road to Albuquerque/Kid's Visit

Homeward Bound

It has been several days since our last post and the most notable item for discussion has been that we were finally transferred to Albuquerque-UNM Children's Hospital last Wednesday. We had been told that it was very possible that we were to transfer last Thursday but Wednesday morning came and it was a go to leave that day. Ernie had come in the Thursday after Mason's g-tube surgery and was with us when we got the news. That Wednesday we ran around and got supplies in order to pack up the breast milk we had stored in the freezer and Fedex it out to New Mexico. The same evening Mason and I boarded an ambulance that drove us to the Lear jet waiting to take us to New Mexico. We had to leave Ernie behind since he had already purchased a return flight ticket for the next day. Mason slept through the entire flight and cried only when we were close to landing at Albuquerque. We taxied over to Cutter-daddy's favorite stop-and another ambulance was waiting for us. We arrived at the PICU (Pediatric Intensive Care Unit) and were settled in. It all worked out perfectly - Ernie stayed behind and cleaned up our room at Ronald McDonald House and checked out the next day.

The best part of being here was that Ernie was able to bring the kids to visit their baby brother!! Baby Jaylen just couldn't get enough of hugging and kissing him. Matthew was all over him and Jordyn concentrated on making up sweet songs to comfort him. Mason just loved it all. Ernie and I took the kids out to the balloon fiesta the evenings of Saturday and Sunday and the kids got to see a few balloon glowing and the fireworks display on both nights. The kids all loved the Ronald McDonald house and felt it was a great little trip. It was really a joy to be able to have some normalcy back in my life. I was so shocked to see how much baby Jaylen had grown! She looks so different from the last time I saw her, which was right after our July 4th camping trip. Both Matthew and Jordyn look a little more grown up but are still my little babies.

Mason continues to work on his feeding. Since UNM does not have the nasty tasting Monogen he now has to have the nasty tasting Portagen. Also, UNM does not have Prilosec so he is now on Prevacid. We have learned that you will receive whichever drug created by whichever pharmaceutical company has contracted with the hospital. We are really in the wrong business.

It is now a matter of time and thoughtful prayers that will allow us to go home before our next surgery date, which is tentatively set for November 11. If Mason can tolerate his feedings without throwing up we have a shot of going home before then. I have faith that this little boy will get us out of here soon.

G Tube

Today Mason successfully underwent the G Tube surgery! Yesterday evening the NP gave us the word that his surgery would most likely occur tomorrow morning. A couple of techs from the lab came by to try and get an IV started. After the 3 allowed sticks (one in each foot and in one hand) they were unable to start an IV. Poor Mason just about passed out from those attempts. He was covered in sweat! Around midnight two of the nurses from the floor came in and attempted to place an IV in the remaining hand. Thank goodness they succeeded on the first attempt.

Around 5:00am we were told that Mason's surgery time would be 8:45am. Around 8:00 or so the NP came in and told us that the actual surgery time would be at 11:00. After a short wait we were off to surgery. I carried Mason in my arms, while one of the nurses carried his portable monitor. We were checked in and were visited by the cardiac anesthesia team. Dr. Robin Church and Dr. Ramamorthy were to be the cardiac anesthesia team and I couldn't be more pleased. They had successfully brought Mason through his first heart surgery and this time he would be under for a much shorter time. I requested to meet the surgeon prior to the procedure. Dr. Hartman promptly came out from his previous surgery and introduced himself to me and "Mr. Terrazas". He was a very nice man and said he had lived in the Taos, NM area before. Here is the link to his faculty profile...http://med.stanford.edu/profiles/Gary_Hartman/

Mason went in to surgery at approximately 11:05 and Dr. Hartman came out and told us all went well at approximately 12:25. Fabulous! After about 40 minutes or so I was called to go ahead and come back to recovery. Sweet Mason was crying his eyes out! Clearly the local pain injections were wearing off. The nurse gave him some pain meds and he felt better. In the meantime, his hematocrit levels had dropped from about 45 pre-surgery to 35 post surgery. This caused some concern with the cardiologist and he requested that they draw more blood before we left recovery. Apparently, this was typically unheard of-the drawing of blood before leaving recovery and the nurses were a little huffy about the request. Nevertheless, the blood was drawn(I requested an expert for this one) and we were back up to the third floor. So far, he has needed one injection of morphine and has been on Tylenol. It appears that he is mostly comfortable. I am so pleased that he came through it very well. One more thing down.

I'll update with photos when I have direct access to ftp sites. Unfortunately the wireless web here at the hospital blocks some sites and prevents uploading to several sites as well. The hospital tries to help the families as much as possible. There are several day lounges that have washer/dryers, microwaves, refrigerators and sleep beds that can be reserved for those families wishing to stay overnight. We are fortunate in that our room allows us to stay overnight at the bedside. Our nurses basically take over everything at night so parents can sleep-for that I am very grateful.

Thank you Dear God for getting us through one more day..... Since I noted the link to Dr. Hartman, here is the link to Dr. Frank Hanley, who performed Mason's first heart surgery...http://med.stanford.edu/profiles/Frank_Hanley/. I saw Dr. Hanley in the hallway while I waited for Mason to return from surgery. Dr. Hanley assured me that these heart patients eventually recover from their eating difficulties and had words of encouragement for me. It was a pleasure meeting up with him again.

Swallow Study #2

Today little Mason had a second swallow study to determine the amount of aspiration he was experiencing. Again, with the unthickened barium liquid he silently aspirated a small amount of fluids in his lungs. Meaning he didn't even cough when it went into his lungs. The danger of this is an extremely hightened risk for pneumonia. The second try was with thickened liquid. This resulted in no aspiration. He was quite hungry, as his 11:00 feed was withheld for the 1:00 testing. There was an improvement over his last swallow study in that very little of the unthickened liquid was aspirated. It appears his vocal cord paralysis/damage is improving.

We have finally, oficially committed to going through with the g-tube surgery. This after several crazy events. This past Saturday, one of the nurse practioners came in and said she would be having surgery come in to have me sign a consent form for the g-tube/nissen surgery. I was certainly taken aback since at no time what we had agreed to. I made it clear we were not on board with doing the nissen/g-tube and that no one had said this was the "plan." She said she would go back to the team and clear up any miscommunication. Shortly thereafter she came back in and said that the team was on board with our decision. On board-that's the term we see hear alot. The next morning Dr. Bernstein came in and said everyone was in agreement and we would proceed with the g-tube only and medication management of the reflux. At this point Mason was taking Previcid and Zantac for the reflux and it has made a tremendous amount of difference-no more puking up all his feeds. At the present, we have weaned him off the Zantac and he is on the Previcid and Regalan. The Regalan has in fact caused some amount of tremors in his legs and arms but at this point the benefits outweigh the side effects. His dosage has moved, 2 times every 6 hours to 2 times every 8 hours, in the hopes of lessening the tremors. Dr. Bernstein made a comment during rounds that had me question what the was talking about. He said he learned something new-we would just proceed with the g-tube. I asked the NP what she thought he was talking about when he said he learned something new. She guessed that it was because the g-tube/nissen was usually performed together-not done one without the other. She said they had to consider the decision thoughtfully because if they had to later to the nissen, it could be viewed as a medical mistake. I don't know exactly what to think. Is this reasoning proper? Do they always just do the two surgeries together whether or not the patient truly needs them just to cover themselves? One of the nurses told me she thought 80% of the patients/families that arrive here never question the decisions by the team. I don't know if we are doing the right thing, but I feel in my heart that it will all work out for the best. I'll leave it up to God.

During my pregnancy I often found myself praying to God and "giving" our baby to God. I always had to correct myself though. I realized that I had to thank God for allowing us to have this little one in our lives.

We have been through a series of "neighbors" lately. I don't recall if I have posted this but here goes. Our teenage neighbor, Tonee, had to go back down to the PICU kicking and screaming. Apparently she was having arythmias-dangerous for her condition and she really didn't want to go back down. That was Saturday night. That morning we got a new neighbor from 5:00am to about 9:00am. She had a series of operations on her heart beginning when she was 2 days old. She is now 17 and enjoys playing golf. She was here for a catherization and will undergo another heart surgery in about 1 month. We enjoyed a quiet room for a few hours but then got another neighbor last night who was to receive a lung transplant. Apparently they drove 5 hours to get here, only to be told about 1 hour after arriving that the lungs were not viable for transplant. Another teenager, she and her family left this morning after being majorly disappointed. Shortly after a baby girl arrived who had just had her Glenn. They are a family from Albuquerque and they hope to leave by the end of the week. This baby has reflux problems as well and promptly threw up her feed. Seems to be a reocurring theme with these heart babies-the reflux that is. Someone told me that perhaps because their hearts are enlarged they might take up more room and therefore cause more problems with reflux.

Little Mason had to be hooked up in the middle of the night for a possible heart arrymthia himself. Rick, our wonderful night nurse, saw a change in his heart beat and called in the cardiac surgeon on duty. They scheduled a 12 lead EKG, which he slept through. This even after they had to reposition his leads for about 30 minutes before getting an appropriate reading. I even had to stand on a chair and lean over the bed to make sure his hands didn't pull something off. This wasn't a problem though-he barely moved. He just grunted to let us know we were bothering him! All went well-nothing to worry about. It was all probably just a problem with the leads moving-the leads he has continually hooked up to him 24/7. These are for heart beat, respiration and oxygen levels. Good news overall.

During the night, Mason takes his feeds entirely by ng tube. He typically doesn't stir much and sleeps pretty much all night-what a blessing. I stay in the room but don't even have to do anyting-the nurses take care of him all night. It sure is going to be different going home.

Holding Pattern

It has been some time since we have had any updates to post. We are basically in a holding pattern. While Mason's cardiovascular recovery has been nothing less than spectacular, his progress on feeding and gaining weight has been at a snail's pace. He has continued to have episodes of emesis (vomiting) and therefore has not been making the weight gains the team would like to see. They are looking for an average weight gain of 30 grams per day-apparently an attainable goal, if you can keep your feeds down!

We were scheduled for the G-tube surgery for tomorrow. This was as a result of Ernie and I going back and forth on whether or not to allow him to go through another surgery. Dr. Goens, our Albuquerque cardiologist, spoke with Ernie on Saturday and explained that she felt he should have the surgery for a variety of reasons: our location/easier to manage g-tube, lessens the risk of aspiration and hopefully we can keep his feeds down. After further discussing with the team at Stanford we had finally come to the decision we would proceed with the surgery. This morning Dr. Bernstein, Chief of Pediatric Cardiology at Lucille Packard, came in during rounds and suggested we should try a course of the drug, Reglan. This would hopefully allow little Mason to increase the motility in his bowels and perhaps reduce his reflux. The thought is that in addition to his G-tube, he may need a Nissen procedure as well. (The Nissen secures a portion of the stomach around the esophogus to tighten it and prevent reflux.) If the Reglan works then it loks like the G-tube may be all that we need. While the G-tube can be taken out when no longer needed, the Nissen is a permanent "fix". I am praying God gives our doctors the wisdom to do the best thing for our little boy. In addition to the Reglan he has started, he continues to take Zantac and Prilosec to try and control what appears to be reflux. His symptoms include vomiting and arching of the back- (elongates the esophogus). These are typical of reflux even though all his tests indicate he has none.

Our friend Robert Davis has finally left for Georgia. Robert has been a patient here on and off for his entire life. His Grandmother, Kathy, left with him today only to have to be in another hospital when she returns for her husband, who has to have heart surgery as well.

Our new friends, Eric & Kristi have been able to leave the hospital as well. Their daughter, Emma, was here again for reoccurance of Chylo. She was discontinued from her re-start of breast milk and put back on the Monogen. I tried the Monogen myself and found it to taste just like corn starch mixed with water, with maybe a little bit of extra yuck added. I am hoping that Mason will be able to have breast milk after his six week course of Monogen with no problems. Time, of course, will tell. Little Mason continues to root for the breast-a rather small disappointment for me. I wish I could feed him-I think most moms believe that their milk will only help their baby. I can't help but wonder if these docs are wrong-breast is the best, right?

Decisions

Mason had his VCUG study, his hypoxia study, echocardiogram and PH Study and all was great. The VCUG studied barium filling his bladder and determined that there was no back flow into his urethra. It appears his kidney and urethra are all just fine. The initial echo on day 1 of life was not the best and this is what lead them to believe he may have the double urethra and smaller left kidney. Apparently, the echo was not very accurate, another one will be done just to make sure. The hypoxia study involved placing him in a small, clear,plastic cube and filling it with oxygen and then reducing the oxygen levels to determine how he would do in the airplane ride back to New Mexico. His 02 levels were approximately 87-88-not a problem at all. His PH probe study involved placing a tube down his nose that had a probe at the end of it. It was left in overnight (Monday through Tuesday) and the results were ready today. Again, all was just fine, meaning he is digesting his food properly and his acid was normal. Quite possible the NG tube was triggering some of his acid reflux/emesis(throwing up). The NG stays in the esophagus and keeps the spynxter muscle to the stomach partially open. The current discussion is still deciding how we will be handling his feeds.

Yesterday, Mason had his first full bottle by mouth. This was 55 ml, which he took down in just a few minutes. The next feed he only drank 30 ml by mouth and the rest was fed through the NG tube (gavaged). The feeding after that he took in a little less, 22 mls. This has been the pattern-ups and downs in quantity and as a result it is the reason they believe that the G tube will be the best to fatten him up. Danielle, Nurse Practitioner on our team, has spoken to Dr. Goens, the cardiologist in Albuquerque and Dr. Ethridge, our Silver City Pediatrician, and they both believed the best option was to have the G tube surgery. It seems that everyone believes it is a clear cut choice-everyone but Ernie and I. We are just fearful of putting him through another surgery. We will have to make this choice soon, but are being given the chance to have surgery either Friday or Tuesday of next week. Tough decisions.

In the meantime, he took a "bath" today and is in a sweet little outfit. He is just so beautiful. Both Tessie and Deacon Don stopped by to visit and say prayers and good thoughts for him. Last night, Kristi Heckelman stopped in to visit. Their daughter, Emma, who just had the Glenn is back for a bought with reoccuring Chylothorax. She experienced some hard breathing and they brought her in and discovered her Chylo had returned. This means back off the breast milk and back on Monogen. She is 5 months old. During rounds today the team felt Mason needed another xray as it appeared he may be breathing a little "rougher." Tachypnic I what I believe it is called. Not very worrisome, but they thought they would check it out. We pray all is well.

Pending our decisions on the G tube we may be air flighted to Albuquqerque next week. We will be staying there for a couple of days to determine how Mason does at altitude. Thank God it appears we are getting closer to home-we really can't wait to see everyone.

Wet Eyes

Today was mostly a good day for little Mason but a little teary eyed for Mommy. During his scheduled 4:00 pm feed Mason just didn't feel like waking up. We had to wait until his 7:00 feed to try his bottle again. Once again his feeding schedule has changed from 2 hr feeds and continuous feeds through the night to 3 hour feeds. This was done to hopefully settle his tummy and make him hungry enough to try bottle feeding. He took in about 10 ML from his bottle but started to gag a little so we stopped. He was then fed through the NG tube. I know it's not our fault but it is disheartening that I can't feed this baby either by breast or bottle. There is such emphasis on having him gain weight, I'm afraid since we are having such a hard time. If only he didn't have to get off the breast milk, we would probably be fine.

No big tests today, just a blood draw and everything looked well. The team is discussing our possible transfer to UNM for next week. That is if we do not get the G-tube surgery done. One of the surgery fellows came in today and asked for me to sign the consent form for surgery. I told him I wouldn't be able to until next week. Hopefully, the PH test he will have done Monday will give me some insight on what we should do. He will also be having another test on Tuesday to see how he will handle the plane ride to Albuquerque. They place some sort of tent over him while he is in bed. I will find out more over the weekend.

Did I mention yesterday he had his final chest tube removed? Also, he had his final stitches removed from his open heart surgery, a echocardiogram and his newborn hearing test, which he passed. Thank God for little things.

More Big News

At about 3:00 pm one of the surgeons came in to remove Mason's pacer wires and his last chest tube. Great news for us! The drainage from the Chylo will be monitored to determine if there continues to be any build up in his chest cavity. They already took an x-ray and will take another in the morning. I imagine there will be several others before we leave. Currently, they are in the room preparing to do an echo cardiogram of little Mason's heart. I will have the chance to view all his new plumbing.

We will be trying another feed by mouth at approximately 5:00 pm. I'm looking forward to seeing if he can do it again.

Oh, and another big thing-his cord fell off today! Big firsts all around.

First Wagon Ride

Baby Mason went on his first wagon ride at the hospital to visit Radiology for a upper gastrointestinal study. They wanted to make sure Mason has all the right components/functions for eating/swallowing. Barium liquid was injected into his NG tube and we were able to follow the flow from his esophagus, stomach, bladder and then into the small intestine. He passed with flying colors.

After a rough night, the team came in and told me they were going to reduce his calories from 24 to 28 calories to see if this reduced his diarrhea, the tube in his chest for the Chylo would be removed, even though it still leaked around the site a little, and he has slight Atelectesis. This is a slight build up of fluids in the lungs due to patients lying in bed for extended periods of time. It is quite common and there is no need for concern at this point. As he is freed from his final chest tube, he will be more mobile and we can hopefully get him more upright. Not too upright, the physical therapist said there should be no "tummy time" for 2 weeks after his chest closure.

The Occupational Therapist, Sandra, just left and we fed Mason his second feed through a bottle. He drank 22 ml-not quite double what he drank yesterday but still more. This is a big deal since in rounds this morning they wanted to push doing a g-tube by next week. This is a feeding tube through the gastrointestinal tract and is something I definitely what to avoid. It would mean another surgery, intubation, recovery etc. This little one doesn't need all that. He shows that he is a trooper as he worked hard to drink his "milk". We have to prove he can do it so we can avoid this surgery.

The Latest

We have been really busy these past couple of days after having been moved to the "step-up" CVICU. It is a four unit area where we had the lucky bed spot. The past several people who have been in that spot have gotten to move up to the 3rd floor. Guess what, so have we! Yesterday evening, after rounds, the doctors told us we were to be moved up to the third floor. This is the final step/floor to be moved to before being able to be sent home. Before we moved, Mason had to undergo a swallow study. Since his left vocal cord was paralyzed/weakened they had to test his swallowing capabilities. He was placed in a small, car seat like chair and x-rayed while he swallowed some barium liquid. The first swallows with the "regular"/thin fluid he silently aspirated. This means it went into his lungs and he didn't cough it up. They then thickened the liquid with a powdered thickening agent and tried again. This time it went down the esophogus where it should have gone. The occupational therapist told us we would be able to begin trying to offer him a bottle with his Monagen and thickening agent to practice eating, so long as the doctors agreed to this plan. Their concern would be that he aspirates liquids in his lungs and eventually this may cause an infection. This, of course, jeopardizes his health.

Last night we made the move into a big boy bed and went upstairs to the infamous 3 West. This was such a big accomplishment, as it is another step to home. Mason's oxygenation levels continue to be mostly in the 90's. The general consesus is to continue to offer the Captopril to try and adjust his blood pressure and hopefully bring down the oxygenation levels. In addition, since we will be going back to a higher altitude, we should see those levels decline-that is what we want. Ideally, 75-85%.

We had a visit from the urologist today who had some concerns regarding his left kidney. She noted that on his echo she believed he might have a duplicate uretha on his left side. She told us that many individuals have this condition and it is often not known about and does not cause any problem. The concerns would be that he could have a blockage or backflow of urine into the kidney. To date, he has had no fever and no urinary infections to speak of. This is great news. Nevertheless, next week he will have a study done to check for any problems. A catheter will be placed into his bladder and dye will be added. When his bladder fills, the dye will be visible traveling through the various areas that are of question. Any abnormalities will result in a closer follow-up. There would be no need for any immediate surgery unless there were something serious to worry about. At this point, they do not seem very concerned, just cautious since there are no Pediatric Urologists they work with in New Mexico. This is such a limited field, I doubt we even have any!

At 2:00 pm, Sandra, the Occupational Therapist, came in and had me hold Mason at the strangest angle and give him a small amount of thickened Monogen. I held him perpendicular to me and on his right side. This was to try and prevent any liquid from making it past the left side that is possible damaged/distressed. He took to the bottle beautifully and drank 15ml before just tiring out. Sandra told me that it is very common for cardiac babies to tire quickly. Drinking that bottle just wore him out and he slept for hours! Fortunately, it looks like he did well for his first attempt. Tomorrow we will try another feed and continue building up. The main goal is to have him properly nurished and gaining weight.

We have struggled for the past couple of days with his feeds. He has had either extremely loose stools or has thrown up on each feed. The night nurse, Analise, suggested we try and thicken his formula and it appears this has worked so far. She told me that she has a daughter who has a heart condition and went through surgery here at Lucille Packard/Stanford. She said her daughter went through the same problems with eating but eventually outgrew them by approximately 3 months. We don't have that time frame to work with as everyone here is so concerned with his adequate growth before his next surgery, the Glenn. I just learned today that we have a tenative surgery date of November 11. As I may have indicated before, this next surgery, while risky, has a much lower mortality rate. We are going to do everything we can to make it there. In the meantime, he takes his feeds through his NG tube (through his nose and into his tummy via a very small feeding tube.) This means no work for him-total bliss since he gets to eat and sleep at once.

The Pediatric Cardiologist, Dr. Raji, is a wonderful person. She is a young woman and really has it together. She thoughtfully explains the teams goals/plans for Mason and makes me feel like I am an important part of his care. This is a totally different outlook from our time in CVICU, where the emphasis is strictly on the patient. Parents aren't always consulted on medical decisions that are made-they just get it done.

All 3 of our former room mates from CVICU have remained there and will continue to be there for some time. Baby Abigial, also from New Mexico, we have to undergo another surgery by the end of the week, Robert is waiting to be extubated and Mandy's baby is awaiting another surgery as well. Mandy's Dad told me he was a little envious that we were moving up to the 3rd floor. I completely understand.

Deacon Don and Tessie both stopped by today to visit and pray over Mason. It is comforting to have these special people pray over him and others here. By the Grace of God we have made it this far.

The sound of the kids back home is so beautiful. Baby Jaylen is learning so many new words and she is bilingual to boot! I can't wait until they are able to see their sweet baby brother to show him all their love.

Baby Mason's Photos -click to be linked to web album

Too much of a good thing

This morning sweet Mason had a surprise ready for Mommy. When I arrived his chest tube had been removed. At least the large chest tube on his right side, the one on the left side will remain until the drainage has been stopped. The other issue we are watching is the level of his oxygen saturation. Most of us have oxygen saturation levels of 95-100%. Little Mason requires his level to be between 75-85%. His current levels have fluctuated but are definitely above 85%-meaning too much blood is flowing to his lungs and not enough to other parts of his body. When I brought up my concerns to the RN she said they had in fact been watching this for the past couple of days and were going to give him Captopril to see if this would lower his blood pressure-in turn this would hopefully lower his oxygen saturation levels. I pray that they are able to stabilize with the medication without lowering his pressure too much. It just doesn't seem right-having too much of a good thing! Just one more hurdle this tough boy will get over-I have faith.

Little Surprises

Yesterday, Daddy and I took lunch break and came back to Mason's bassinet to find a voice specialist around his bed. Apparently, while we were gone, they performed a test to see if there was any damage to his vocal cords. Children who have undergone surgical repairs to the left side of the heart often have their vocal cords damaged. The doctor, with no bedside manner whatsoever, told us that one of his vocal cords was not working. She indicated that is was probably due to surgery and he may have difficulty in swallowing. It was obvious she had never gone to Tact 101 while in medical school-the message was delivered with very little compassion. Fortunately, there was an therapist that was there to visit us who told us she would be performing a swallow study on Tuesday. We pray the cord isn't completely damaged-according to the therpist, Dr. Hanley and several nurses there is a 50% chance that it will repair itself and return on its own. Right now, Mason has a sweet little cry.

Today, Ernie left back home. It is time that the kids know that we still exsist! He hasn't told them he was coming and will be giving them a big surprise. Another big step was taken today. Baby Mason got his RA line out. This is a lijne/lead that goes directly into his heart. He bleda little when they pulled it out and therefore they had to give him some blood. The hurses took this time to change ot his dressings and find another vein for his IV line. I should be able to hold him sometime today. The chest tubes will be one of the last things to go. We also found out that he would be changed over to formula, Monogen, because the fat in the breast milk is going into his lymph nodes and being excreted out. You can see this in the secretions coming from his left chest tube. The clinical term for this is Chylothorax. It is caused due to trauma/nick in the lymph nodes near his heart. This is typically seen in repairs/surgery done to the aortic arch. The chyle from the lymph nodes is leaking out and filling his pleural space (space around his left lung). The condition is expected to heal on its own but I was told it may be undertermined amount of time. This means we will not be leaving the hospital until the drainage has cleared up. That is okay though-it was caught and we are hopeful that his little body can fix itself from this as well.

Extubation Day

Yesterday, Tuesday, August 27th was the day Mason was to be extubated. When we arrived to the CVICU early that morning he had just had another tube put into the back of his chest. The fluid that has been building up needed to be removed prior to having his tube come out and therefore his planned extubation needed to wait another day.

Ernie headed over to CVICU this morning to find that the doctors had decided that they would go ahead and remove his tube today. I remained back at the house to finish up some paperwork and got a text from Ernie saying they were about to do the procedure. Daddy was there to take the pictures and see the wonderful event. I'm actually glad I wasn't there since I didn't need to see him under any stress. Luckily, everything went well and he was able to breathe on his own. Another great accomplishment for our little one. He remained awake for the next five hours. His beautiful little eyes followed each of our faces. He looks so beautiful!

Starting out at 8 pounds 14 ounces sure must have come in handy,since now he looks so thin! Most likely he will be weighed in the next day or two and we'll be able to see just how much weight he has lost. Soon, the goal will be to put some of that weight back on. We are eagerly awaiting the dotor's ok to begin his feeds again. This is breast milk fed through the tube in his nose. One of the challenges for me has been to keep pumping every two hours or so for this little one. It's just a small thing to have to do compared to everything he has been through so far. As so many care to remind us, it's a long haul.

Mason's Chest Closing

Monday, August 25, 2008 was the day Mason's chest was closed! For the past few days, each doctor/nurse/nurse practioner commented on how good Mason's progress was. Each day we saw his swelling go down and his chest was coming together on its own. He is such an amazingly tough little guy and is holding his own.

We spend the majority of the day at his bedside. Although he is only 7 days old today, we know he is aware his Mommy and Daddy are there for him. The doctors told us that is was very possible that Mason would have his chest closed on Monday but of course, it was all pending on the surgeon's availability and bed space in the CVICU,(cardiovascular intensive care unit). We were told that Dr. Hanley was not in, but that Dr. Reddy would be the one doing the surgery along with Dr. Maeda one of the Fellows. The surgery would take place in the CVICU itself, not in the operating room. The room is removed of all visitors/parents and non-essential staff and the OR team is brought in. We waited all day for word and heard that around 3:30Dr. Reddy was giving his 45 minute notice to the parents of the patient he was operating on. Around 4:30 Dr. Reddy came in and told me, "looks like he will have his chest closed soon." We were so excited since we thought there was no way he would be set to go today. An hour or so later, the CVICU was closed off and Mason was on his way to closing his chest. At 6:20 pm Dr. Maeda came over to us in the patient waiting area and told us that everything went well. Mason had no problems with his pressure/stats so they were pleased with his results. We were so excited-this was such a fabulous step. His chest is being held together with surgical wire and will be re-opened on his next operation. Those wires will be there for the rest of his life!

This morning during rounds, the Doctors all agreed that he should be weaned from some of his medications, which include the paralyzing agent and morphine drip. The morphine itself can be administered by his nurse if she sees that he is getting agitated. I find myself so tearful wondering if he is in any pain. I can only continue to pray to God that he is watching over this sweet little boy.

When I walked in this morning, the curtains were pulled open and sunshine was bathing him in such a beautiful glow. For the first time since minutes after his birth he opened his beautiful eyes. He was staring right at me-I don't know for sure if he could see his Mommy but it felt so good no matter what! When he hears Daddy his heart rate goes up-we know he can hear us at the very least. Throughout the day he has started moving his limbs around a little at a time. His jerky movements are small but every one is helping his circulation improve. The most uncomfortable thing to watch has been when the nurses or the respiratory staff suction out his chest. Once he was crying, without sound, and started to turn purple due to the fact that the tube that is providing his oxygen/breathes is being suctioned out and he is void of air at the time. My heart felt such pain-I wish I could be there instead of him. Ernie asked his nurse, Anne, if this was typical and she said yes. She assured him that it appeared that Mason was not in pain since his blood pressure and oxygen levels changed during the procedure but shortly thereafter went down/up respectively. This is little reassurance to a mom not wanting any pain to come to her child.

We will be heading back to the hospital shortly to resume our vigil. Nurse Rosalina will be there tonight. She has been in the pediatric nursing field for over 30 years and takes the best of care with this little one. The only way I have been able to sleep at night is knowing he is in her care.

Baby Mason's Surgery Photos

August 22, 2008 Mason's Surgery, August 23, 2008 1 Day Post Op

Surgery Day

The most highly anticipated day of our lives has finally arrived. We heard Thursday that Mason's surgery had been scheduled for Friday morning-first surgery of the day. I asked to be able to hold him and got the okay from Dr. Hintz, the Neonatologist. Daddy went to give blood and I held Mason for approximately 2 hours. It was so wonderful! The transfer from his bed to my arms was almost effortless, regardless of all the wires and tubes he was connected to.

When we arrived at the hospital Friday morning we were greeted with the news that, yes, in fact he would be headed to surgery in the morning. His nurse then was able to have Daddy hold Mason for a while before getting him ready. When it was time to head to surgery he was sleeping on his tummy comfortably. The Director of Pediatric Anesthesia, Chandra Ramamoorthy, MD, was to be in charge of his anesthesia and was assissted by one of her Fellows. Her Fellow commented on Mason being the best hypoplast she had seen! Dr. Ramammorthy was ready to take Mason but found one of his leads not connected to the portable statistics/readers. She promptly took charged and found what was missing and we were off. At approximately 8:30 am when began our walk to surgery. When we reached the coridor to the surgery unit, I lost my composure and started to cry. One of the worst things possible is to have to give your baby to others for one of the most complex surgeries that could be performed on an infant.

At approximately 2:00 pm we were found by Arden, Patient Care Coordinator, and told we were getting our 45 minute call. This meant that in approximately 45 minutes the surgeon would be out to speak to us. A little over an hour later, Ernie saw Dr. Hanley coming towards the patient waiting area, where we were tucked behind a post. He almost walked away and Ernie called out to him. I quickly searched his face for the answers he would be giving us and knew things went well. He began by telling us that everything went as close to perfect as possible. There were no new anomolies that were encountered, everything was just as they expected with the heart. He said Mason was on the heart/lung bypass machine for 1 1/2 hours and that this was on the low end of the spectrum. I asked what we would expect to see when Mason was out and Dr. Hanley told us that he would have his chest open but covered, in somewhat of a football shaped opening and of course he would be connected to a series of ivs, chest tubes, monitors, etc. Dr. Hanley also told us the next 24-48 hours were the most critical. In addition, he commented on the fact that we grew a healthy, strong boy and that helped. We expressed our sincere thanks for all that he had done and asked that he thank his entire team for all their efforts. He gave us a wonderful smile and said he would be sure to do so. In approximately another hour we would see our sweet baby boy.

Exitement consumed us as we approched the CVICU (cardiac care unit). Mason had made the first step towards the pallative repair of his heart. We made it over to his bassinett and found him hooked up to all those drips, ivs, tubes, monitors, etc. that we had been seeing in photos of other surgeries and which Dr. Hanley told us about. I almost couldn't see any of those things, but focused solely on my beautiful little boy. I was so thankful that God took him in his hands and has given him the strength to get this far. We almost couldn't contain the joy we felt upon seeing him-no matter how many other things were connected to him. We spent most of the afternoon and evening with him and went back to Ronald McDonald for some fitful sleep. I called his nurse, Julie at 1:30 and 5:30 to ask how he was doing and both times she said he was doing well.

This morning we headed off to the hospital and thought we would be getting there in time for rounds. We were told they would be approx 9-10 am but were in fact done at 7:30. No worries, we heard that all had gone well and that the only order thus far would be to add diuretics to remove some of the fluid build up. In fact, if you look at him he doesn't have too much build up at all. Throughout the day, we sat at his bedside and took breaks for breakfast, lunch, and breast pumping! I did notice that occasionally he had a couple erradict breathes but was told that they would be sure to monitor that he was still properly sedated. They do not want him to wake up with his chest open. His nurse, Melanie, told us that they would gradually wean him off his medications once his chest was closed. We later heard from the Head RN that it looked like his chest might even get closed tomorrow, Sunday. This was so exciting! Everyone who has seen him thus far, medically, seems to think he is doing very well. Of course, the Head RN let us know that there have been times when they think everything is going great and something unexpected happens. Overall, she said he is doing picture perfect. He is receiving some blood to accomodate his somewhat low bloodpressure and will receive the diuretic to allow him to urinate later today. In the meantime, nurse Melanie told us she will be changing all the drip lines as they are removing the tubes from his naval. She will be hooking up new lines to run through the existing arterial lines. I counted approximately 8 drip lines she would be changine-but possible more.

The following is a list of medications he is being given: (nurse Melanie, kindly printed out this list along with a print out of each drug and their description/usage)

Epinepherine-helps blood pressure

Milrinon-increased bloof flow to the extremities

Dopamine-helps blood pressure

Heparin-prevents blood clots

Vecuronium-paralytic while his chest is open

Calcium Chloride-helps blood pressure and heart contractions

Morphine-pain medication

Around the clock:

Zantac-prevent acid production in the stomch

Cefazikub-antibiotic

Asprin-prevents blood clots

We will be heading back to the hospital shortly to meet the new nurse in charge of Mason's care-she will arrive at 7:00pm for change of shift. Although our strong boy has made it through his first surgery we have a long road to go. With all the support of our friends and family and most importantly, the faith we have in God, we know we can make it through.

Thank you Dear God for all you have done in our lives. We especially praise and thank you for allowing us to have Mason here with us today.

Baby Mason's Baptism

Our sweet little boy was baptized today. We had Deacon Don Sifferman perform the rite of baptism while Mason was in the NICU. His godparents are Bill & Marsie Dignam, our good friends from Silver City. Although they were not here today, we know they had us in their thoughts and prayers.

So far Mason has done extremely well and has not needed to be intubated-no tube for oxygen. We believe it might be possible that his first heart surgery (Norwood Procedure) may take place Friday. We continue to pray that God keeps him in his arms and protects him each day.

Baby Mason's Photo Album

Baby Mason August 19, 2008 5:50 pm

Baby Mason Stephen Terrazas has arrived. After starting my induction at 5:00 am, we waited a little over 12 hours for our beautiful new baby to arrive. He was born at 5:50 PM, 8lbs, 14 oz. He looks so good-everyone was glad to see that he is doing amazingly well so far. For the next few days there will be several cardiologists that will be closely monitoring his oxygen levels, blood flow, blood gases, etc. We hope to here of a tentative surgery date by tomorrow.

In the meantime, I had to pump that all important colostrum and in one of the photos in the above photo album he is being given it via syringe. He is allowed a certain amount every six hours. They do not allow HLHS babies to feed right away, but instead have placed a line in his umbilical cord stump to place fluids directly into his blood stream. This will be his only nutrition for some time. After a great birth he was taken away to the NICU (Neonatal Intensive Care Unit) where Daddy followed him in. It is so difficult to see that he has to stay there-he looks so perfect. God has gotten us safely this far-we will continue to ask him for all his help and blessings.

Photos of Ronald McDonald House

Strike 1

We called the hospital today before heading over for the induction and were told to try and get there a little earlier than the 10:30 scheduled time. When we arrived we were directed to a room and thought things were going to get under way quickly. Unfortunately, due to all the kaos of several deliveries my Oxytocin wasn't started until 1:10. We were introduced to a number of doctors, nurses, a deacon, and a student within a few hours. I was to receive the medication every 30 minutes but it just didn't work out that way. My contractions did start but they never were unbearable. At 5:00 pm one of the doctors came in and said that the pediatric doctors thought it was best to discontinue the induction and start over early tomorrow morning. This means that I will be staying overnight and playing the waiting game...again!

That really nice room I was told about wasn't available so Ernie had the most uncomfortable chair to "relax" in. After all our complaining we were finally moved to a room with a small couch for him. A couple of ladies with children here just stopped by to check in on us. The relationships we are building here are so supportive. It is nice to be able to speak to those who have been or are going through similar experiences. We are all praying for one another.

Almost Time

I am scheduled for an induction at 10:30am. Dr. Cheuh asked me to call the hospital around 8:30 to see if this is still possible. They have to make sure there is a room available for us. With so many babies being born here, there is a chance all the labor & delivery rooms may be occupied! I took a look at one of the rooms while on my tour last week and they were great. They even have a spouse couch.

In the past few days I have met several more people with children that have had the first operation for HLHS, have just had a heart transplant, have had an unsuccessful transplant and are awaiting a new one, waiting for a new liver, received a new liver, have had a heart and both lung transplant, have a baby with pulmunary artresia and has had one surgery, received a new heart and is almost in the 100 day waiting period before going home and someone that has a baby going home after their second surgery for HLHS. It is so amazing to hear of all these courageous stories. There is absolutely no doubt that we are not going through all this alone.

We have spent some late nights talking about our children, families and life back home. I have even met one couple, Denise and Eric, who are from Pecos, New Mexico. They have the infant with pulmonary artresia and Turner's Syndrome. Her first surgery was not a complete success and she as a leaking mitral valve. Denise will have to leave back to New Mexico tomorrow to return to her job; her husband will being staying and trying to find a job here. Once he does, they will relocate to Palo Alto.

Mr. & Mrs. John Crane gave us a beautiful Christening outfit. It includes cap and booties that were all hand crocheted. It has to be one of the most beautiful things we have seen. We appreciate this so much. We have scheduled for the baby to be baptized shortly after birth. If all goes well, we will have our beautiful baby boy join us outside the womb tomorrow.

Visit to High Risk OB

Bright and early this morning I headed over to the hospital for my fetal non stress test. I got to lay down for approx. 20 minutes and take a little nap while they monitored the baby. They are checking for fetal movements/sleep patterns. The baby's heart rate should increase when he moves around and a monitor keeps track of this, along with any contractions and general movements. Thankfully, all is well.

I hiked across the street to the High Risk OB's office for my first visit with the OB. I met with the OB Fellow and the OB, Dr. Cheuh who asked me basic questions regarding my past deliveries. They figured that they would schedule an induction either Monday or Tuesday of next week. That is just a few days before my actual due date. This allows them to have the perinatal, cardiology and ob teams ready for when the baby arrives. I have to believe that I couldn't be in a better place. Almost everyone I have encountered has been really supportive and offer their best wishes.

I went downtown and had lunch out at the Cheesecake Factory. It is really a beautiful building inside-I can't wait until we have one of these somewhere near home. I ordered a piece of carrot cake cheesecake to go and it awaits me in our mini fridge. Ernie has changed plans and will be flying in Saturday morning. One final Sunday at church praying for all the best before the baby arrives-please keep all those wonderful thoughts and prayers going for us-we need them all.

Visit to Neonatologist

My first visit to the neonatologist was today. It was a little sad having to make it over to visit the doctor without Ernie. In general, being here seems almost like I'm back at college and living in my old apartment-minus the kitchen and pool! Dr. Hentz is the neonatologist who will be in charge of the team taking care of the baby as soon as he is born. She went over the typical procedures that would occur upon birth. Most importantly, they will be taking the baby into the Neonatal Intensive Care Unit (NICU) and will begin monitoring him immediately. If he seems pretty stable when he is born we will be able to hold him briefly prior to them taking him over to the NICU. After he finds his new home in the NICU, we will not be able to hold him for several weeks or months. That is going to be very difficult....

One of the first medications they will be giving him is prostaglandins. This is a medication used to keep the ductus arteriosus open. This will allow for free mixing of the blood between the chambers of the heart and allows the baby to live until his first surgery. Dr. Hentz explained that a baby will typically be scheduled for the first surgery within a week of birth and having babies on prostaglandins for even a month or more is "okay." She also discussed the possibility of the baby being intubated immediately. I am hoping this isn't the case-I pray for as little intervention as possible before surgery.

My next doctor's visit will be to the OB, Dr. Cheuh, on Wednesday. According to Dr. Hentz, she has spoken to Dr. Cheuh and feels that Dr. Cheuh will have a scheduled induction date for me on my visit. After having the last 3 children as scheduled, I feel I prefer this! I just hope baby continues following the plan.

One of the strange things we have encountered was the difference in "guestimate" of the baby's weight via ultrasound. On my last OB visit in Las Cruces the ultrasound technician told us that the baby was just under 8 pounds. This added to our urgency to go ahead and get out to California right away, seeing as this kid was very well ready. Well, on my ultrasound here at Stanford they thought the baby was 7lbs 4 oz but told us the ultrasound had a plus or minus of 1 pound!!! No one has ever told us that about ultrasounds before. Since we are at a highly regarded institution, I tend to want to believe them.

On a few side notes, I had dinner here at the house. It was provided by a local restaurant and consisted of chicken burritos with all the trimmings. Very nice. I ended up speaking to another Mom for a while, and was soon approached by some of the volunteers at RMH. Ernie had called looking for me. I left my cell phone in the room and he had been calling for sometime. They were so concerned and ended up checking my room and finally locating me for him. I was glad to hear they were able to look after me. I was then promptly scolded, by Ernie, for not carrying my phone! Something I am told I must have at all times! ; )

Jordyn started school today and Ernie took her in to meet her teacher, who Ernie said was very nice. Jordyn rode the bus to Grandma's house after school and seemed to like it. I miss the kids so much!

Settling in

The past week has been pretty uneventful as far as things go. That is considering being away from everyone and everything you know. We have had several visits to Stanford's Lucille Packard Children's Hospital. The last was on Friday, August 8, 2008 where we had a fetal echo. Admittedly, I was hoping for some miraculous change. The echo failed to provide such a result. His left ventricle is still smaller than the right and continues to be poorly functioning.
Fortunately, the regular ultrasound showed no further problems with the baby.

Ernie left to go back home today. Jordyn starts school tomorrow and we are in a waiting game to see if Matthew can enroll in Head Start. As we found out, Head Start is primarily for low income children. Those who can least afford things are allowed in first and if there is any room, approximately 5% of other children may be allowed to attend as well. This didn't look good for us, but again some friends of ours are trying to "pull some strings" to get him in. He would be attending the same school as Jordyn and since we will be away so much, it would probably be the best thing for us. The kids just go back from their trip to Mexico this past Monday. I am so jealous that Ernie got to see them-it just breaks my heart that I won't be seeing them until who knows when. Thankfully, my aunt is there with my Mom and the kids will be in the best of care. We've had so many people call to wish us well and offer us help back home. It means so much to know how much support we have. I am so thankful to all of you.

Tomorrow I will visit the perinatologist. I imagine she will discuss the plan for the baby once he is born. It is amazing the number individuals who will be involved in the care, I can't even imagine how it all gets coordinated.

I met a Aunt/Grandmother and her daughter today who have a nephew that just underwent his third surgery here at Stanford. He has was is known as pulmonary atresia-from what his Grandmother says, he was born without a pulmonary artery. Dr. Hanley, who will be performing the surgery on our baby, has been the chief surgeon for her grandson. His surgery was this past Wednesday and seemed to go well. They were replacing a shunt in his heart. After time, shunts that are placed in the heart are outgrown and therefore there is a need to replace them. His case went from good to bad as his diaphragm was nicked during surgery and he only has one lung. This has made it difficult for him to come off the respirator. His Grandmother told me that they tried to take a tube from his lung out and he started to suffocate. She also confided that Dr. Hanley told her this surgery is merely to prolong his life, it is not a permanent fix. Of course, hope is what they have had all this time since he was diagnosed at approx 18 months. He is now 3.

Sadly, this is what we will be facing as well-not a fix but a chance to prolong the baby's life. From what I have read, surgery for HLHS has been done successful for approximately the past 10 years. More children have been surviving, but the oldest are merely in their 20's. What a joy it would be to have your child alive to at least then.

Another bit of good news came to us as we were able to move into the Ronald McDonald House. The house is especially for children and their families who will be undergoing surgeries of all kinds here in Palo Alto. As you can imagine the waiting list to get in is extremely long and goes on for months. So instead of having to pay almost $900.00 per week for our stay we will be paying $70.00 per week. What a blessing!! The house is near the hospital and across the street from the Stanford Mall. The mall has high end stores such as Louis Vuitton, 7 for All Man Kind, Macy's, Neiman Marcus, etc. Many of the people that stay at the house take a walk across the street and just stroll this beautiful outdoor mall. I would hazard to say, that not many of them do much shopping at those high end places. We probably frequent the Gap or some of the other chain stores we find back home.

Another common thing around here are BMW's. This has to be the BMW capitol of the world-other than in Germany of course. There a tons of them! There are a fair share of Mercedes as well, but the smaller class BMW's are everywhere! One thing you don't see around here much are trucks. We saw a dually the other day and that really stood out.

Considering everything, this is a very nice place.

What is this hypo plastic left heart thing?

Basically, hypo plastic left heart syndrome (HLHS) is a congenital heart defect. In layman's terms, the left ventricle of the heart is characterized by it's small size and poor contractability. At least this is the case for our baby, who was diagnosed at approximately 20 weeks of gestation. This is a devastating diagnosis since there are only 3 basic options for the baby: terminate the pregnancy, go through a 3 stage pallative surgery or heart transplant or opt for compassionate care. The latter, would mean I would give birth to this beautiful little boy and then allow him to die naturally-no surgical intervention. Well, with 2 stubborn parents like us the only way we would go is to allow a skilled surgeon to perform the surgeries. This is the most difficult route but we know God is with us all. If you are wondering what causes this-no one knows for sure. Congenital heart defects are not in either side of our families. I was very sick in February, at a critical developmental time for the baby, so maybe this caused it. Regardless, we have had to take monthly visits to Albuquerque for Pediatric Cardiologist, Dr. Beth Goens, to monitor the baby's heart via echocardiogram. Although Dr. Goens predicted that the baby's left ventricle would not grow and he would have aortic stenosis we did see his left ventricle grow. Unfortunately, the contractability of the ventricle itself is not good. Therefore, he will need these surgeries to survive. This week we will see a series of specialists to make sure his condition is what everyone says it is. We then prepare for the challenging road ahead-I know we will make it through. Everything so far says this is true.....

The Journey REALLY begins August 1, 2008

It was about 2:00 am on August 1, 2008 that our baby was telling me that he is just about ready to enter life outside the womb. I woke up Ernie and told him I thought we should visit the hospital to see what all these contractions were about. After quick showers, we got dressed and I packed MY bags we headed into town. Just as we were to turn towards the hospital I suggested we should just go to the office and print out payroll and other misc checks. I'm sure the guys would appreciate having their checks just in case we wouldn't be back! After a couple of hours at the office, we then were headed back to the hospital. My contractions had pretty much disappeared, and again, at the turn to the hospital, I decided we should just go home. So home, we went and I finally fell asleep around 5:00 am. After some fitfull sleep, I decided I had finally had enough and we got ready, AGAIN, and went in to town. I thought eating might help a bit. so we stopped at Sonic and tried to eat something. We finally checked into the hospital and I was promptly monitored. Yes, in fact I was having contractions. Dr. Nwakuchu came in and decided I needed to be on IV fluids. So there I lay, hours of waiting. It was just what I thought would happen and probably why I really didn't want to stop there in the first place. At about 1:30 Dr. Nwakuchu came in and strongly suggested that we get ourselves out to California. Wow! I really wasn't ready to be told that. Our scheduled date to leave was August 10th and the kids wouldn't be back from Mexico until August 4th! We really didn't feel like we had a choice, so off we went to the office to try and book some tickets out ASAP. Ernie went over to our friend, Scott Nichols, and asked if he would be able to let us use his plane to fly to Albuquerque. Our other friend, Matt Ormond, was to be the pilot. Yes, Ernie would have flown us, but his plane would have gotten us there in twice the time and besides he hasn't trained to fly a turbo prop yet. Anyhow, Scott said , "Yes" and we were set to go. The tickets were purchased and Ernie just had to go back home and pack his bag, stop at the bank, let Michael know what was going on, make sure we asked him to do some important things and we could head out. In the meantime, our friends, JC and LeAnn Robinson, contacted Scott and through LeAnn's insistance, asked him if we could just use the plane to go direct! Again, Scott generously agreed. Matt agreed and so now we were to fly straight over. I cancelled the tickets out of Albuquerque and we went to Grant County Airport where we took off at 7:00pm. After a short 3:10 minute flight, we were in San Jose. We got the rental car, found Matt and his son, Phillip, a hotel and went out to eat. At approx 2:00 am (home town time) we got to our hotel and managed to fall dead asleep! You are probably wondering about those contractions that started the whole series of events. Well, after all those IV fluids, they have mostly gone away! I had called the nurse coordinator at the Stanford Labor & Delivery Unit and she told me that although she heard of me, my file wasn't ready yet. If I go into labor during the weekend, I should just go in and see if they can go into the high risk ob nurses' office and locate my paperwork. Let's just pray that baby can hang out until sometime next week! Baby T-you are on your way......oh, we still don't have a name yet either!