'Tis the season to be thankful

Well, it was this date last year that we were getting ready to travel to Palo Alto, CA for Mason's Glenn surgery. That was to be the "easy" surgery. As if any open heart surgery could be easy, but as you know it turned out to be the worst one for our little Mason. Thankfully, we had some divine intervention and he pulled through. Today, we live almost normal lives, trying to keep the gravity of his condition in the depths of our minds. Whenever I tap into those thoughts I turn teary eyed and can't help but imagine the worst. It usually doesn't happen unless I have read someone else's blog. Someone whos child has not been so lucky and is still in the hospital, someone's child whose heart is starting to fail and they now await a transplant or someone's child whose passed. It's always someone. It just doesn't seem right that it has to be a little child with so much to give.

Giving is certainly what Mason has done. He has given us hope, courage, strength, a stronger faith in God and more love than any human being deserves. We are so thankful for these days!

Uneventful visit-or should I say for me...

On October 21 Mason, Daddy and I traveled to Albuquerque to visit with Mason's cardiologist, Dr. Goens and visit with the Pediatric Surgeon, Dr. Lemon. The good news was that Dr. Goens believed that Mason's heart looked good enough to get rid of the Digoxin and simply increase his Enalapril. The reason being that the Digoxin was used to increase the forcefulness of his ventricle and was especially needed after December's life-threatening events. His heart has recovered enough to hopefully keep him off of the Digoxin for some time. As Dr. Goens explained to me, the goal is to keep Mason's own heart functioning as well as possible for as long as possible. We wouldn't want to wear it out further by keeping his ventricle pumping more forcefully with the Digoxin. She did comment that she thought perhaps there was a slight decrease in function since his last echo but that was subjective. Give it to someone else to read and they might not see the same thing. So to us, all looked pretty darn good.

Now, his peds surgery visit was not as nice. After discussion and evaluation from the med student, Dr. Lemon and Dr. Lemon's nurse it was decided that we try the silver nitrate first in order to hopefully avoid surgery to close his still, leaking fistula. (g-tube site) We had to hold Mason down while the nurse pushed in the swab that contained the silver nitrate into his g-tube fistula. Not a good thing. She asked the med student to hold his legs down while I took his arms. The nurse was apparently a little frustrated with the student's inability to hold his little legs down. She commented to the student, "Now you see, he has been through things like this before, he knows what he is doing and how to move his legs, you have to hold them down!" Of course, she took over the leg part and held him down and applied the silver nitrate at the same time. Horrible for Mason but worse for Ernie and I when we had to do it at home on Saturday. The wonderful news is that it looks like it might have worked! I pray that his fistula closes and we can avoid surgery. It would only be a minor surgery, but I am so afraid of him undergoing anesthesia without a cardiac anthesiologist on hand. Maybe I don't understand the "minimal" risks but I would feel better having any surgery done on Mason out of state! All that being said, look what happened in December at Stanford, of all places. We'll just have to give to God, I know he is taking care of us. So all in all, the visit was "uneventful" and deemed a success! Thank you God!

I almost forgot to metion, Mason took a couple of steps on his own, two times, both while Billy and Marsie were over at the house. I guess he was just showing off! We know he'll be walking in no time. Now then, we'll really have something to report.

Birthday Boy

Happy Birthday Baby T

What a beautiful day for our little Mason's birthday! Absolutely perfect skies with warm sunshine filling every crevice available and little Mason's happy face filling our hearts. It has been a year filled lows and highs and each day has had a little bit of a challenge. From normal baby things like learning to crawl to a heart baby leaving his g-tube behind. There isn't a better place we could be and as always we thank God for giving us so many things to be thankful for. Here's to everyone who has helped us get our little boy through that tough first year and to those who will be helping us get through all those in the future-may your heart be filled with the kind of peace and love we have been blessed to experience.

To my Mason, your are perfection in each and every form, with an innocence found here on earth only as a child. Your rebuilt heart a perfect little machine able to work in a way no one could imagine. To live each day with you is to know the great and glorious power of God, for it is he who has given you life, given the doctors and nurses the knowledge to help fix your heart and for everyone you encounter to be filled with happiness whenever they meet you.

Today is one year from the beginning of our journey, little one. With faith and love many more are to come. We all love you so much!! Happy Birthday Big Boy!!!

We are almost there

Back in January I had applied to the Medically Fragile and Developmental Disabilities Programs for Mason. It wasn't until this past month that I heard from both, one that Mason had been allocated funds for nursing care and the second program wanted additional medical information. I am happy to say , at this point, he needs neither program. When Cathy, nurse from Medically Fragile called me, I was happy to report to her that Mason was off his 02 and his g-tube was removed. She wanted to see him in person and was just amazed at how great he looked. She was thrilled to see how active he was. As for the DD Program, Mr. Piel, spoke to me and told me he had received my enormous box of medically records and from what he could tell, it appears Mason isn't in need of those services at this time as well. The DD program is more for those children and adults who are considered "mentally retarded" and they offer nursing, respite, life skills and other programs to facilitate their lives and the lives of thosearound them. If and when there is a need I would simply reapply for either program. The reasoning to apply to begin with is that there is such a long wait to be on these programs and people wait months/years to be accepted and the fact that when we got back from Stanford in December Mason was in rough shape.

So here we are today only a few days away from his 1st Birthday! Amazing life we have nurtured for this past year. He is such a joy and everyone he encounters simply just falls head over heals over his jolly personality. Thank God for every step we've taken, forward and back, as we have learned so much from this journey we are on.

Our motto now, Don't worry today about what could happen tomorrow. If it never happens then you'll have worried twice!

Mickey is gone

Monday was a good day. We had a visit with Dr. Etheridge who was to remove Mason's g tube (mickey button). After a brief visit we decided that we would just remove it at home closer to bedtime. I figured that it would be better to do it at night while he didn't have much in his stomach. So we went to Daddy's baseball game and as soon as we returned home we just deflated the retention balloon and out it came. He had very little discharge in the next morning and I thought we would be home free since Dr. Etheridge said the actual hole in the stomach would close in about 4 hours. Unfortunately, it just isn't that simple. When Mason drinks liquids he has minor discharge and with increased activity the discharge becomes more significant. The site itself looks good so now it is a matter of wait and see. Most literature I have read indicates the site should close within a month and if not then surgery would be required to close the hole. This is a perfect time to do this though as Jordyn, Matthew and Jaylen are in Mexico and I devote all my time to Mason. He is just a doll and is happy 99% of the time. Everywhere we go he inspires smiles from others as well as comments like he is so beautiful, he is so happy, what a beautiful smile, what beautiful eyes, etc. I guarantee part of the reason he was given to us was to inspire joy and happiness in all those around him. His story is an inspiration and once you hear it you can't help but falling in love with him.

He has now perfect the goodbye wave and crawl. Next are his attempts at pulling up and standing, soon enough he will be walking. What a long way we've come.

Knowing

These are some wonderful days! Our little Mason is developing such a personality. He loves to smile and laugh out loud and each moment near him is pure joy. He loves watching his brothers and sisters and they love him so much. So much so that Jaylen loves to squeeze him tight; much to the annoyance of little Mason, who in turn tries with all his might to escape her clutches.

Last week we all headed to Grandma's house in Deming to take her to the bank. After the post office said they had not received Grandma's renewal payment for her po box of some 30 plus years, they gave away her box two weeks after the expiration/renewal date. So there we were, faced with changing over all important bills, insurances, etc. While we were at the bank officer's desk I asked Jordyn to take Mason, Matthew and Jaylen over to the fireplace while we dealt with changing the address on Grandma's account. In short order, I heard a thud and then Mason's hurt cry. I quickly got up and found Jordyn holding Mason and telling me that she thinks he got a little hurt. Apparently, Jordyn entrusted Mason to Matthew and Jaylen and a swivel chair! They had spun the chair around and Mason flew off. He got a little bump on his head but thankfully he seemed fine. I sent them all outside to wait it out. Within a few minutes I saw a parade of little bodies coming in to get some water from the fountain, all with bright red faces. I think I may have gotten in trouble with some authority if they knew I sent them out alone but I was upset that they hurt their sweet, little brother. As we were leaving Matthew pointed out the spot where he had peed while outside. This being right outside one of the banks large windows, some officer got quite a show. Needless to say, I won't be taking them back to the bank anytime soon.

Our traditional 4th of July camping trip included Mason this year. He loved being out in the woods and was so happy almost the entire time. Another big event happened the week leading up to our camping trip; Mason learned to crawl! He looks so precious scooting around, changing from crawling on hands and knees, to putting one leg out and pushing his butt forward. If you just take a look at him you would never, ever imagine he has a congenital heart defect that affects every aspect of his living.

Knowing he has something so wrong with his heart isn't the problem. It's the wondering when his heart won't work anymore that creeps up in my mind when I least want it to. There isn't anyway to explain this to "normal" people, only those that are going through this can truly understand the hurt you feel to know there is always something about to happen around the corner. The only solace is that I think we can all get comfort in knowing we are not alone in dealing with this. That doesn't sound that great either...Knowledge-it's not all that great is it?

The following is a great video on the basics of Mason's next scheduled surgery, the Fontan. The video is from 2001. I forgot to mention on my last post, we got rid of Mason's Lasix as well! That means he is on Digoxin, Enalapril, Reglan and 1/2 baby aspirin. Next to go will be the Reglan!

http://vvi.onstreammedia.com/cgi-bin/visearch?user=pbs-saf&template=play220asf.html&query=%2A&squery=%2BClipID%3A2+%2BVideoAsset%3Apbssaf1104&inputField=%20&entire=No&ccstart=99833&ccend=870000&videoID=pbssaf1104

Pediatric Visit-Full House

Mason had his 9 month pediatric well visit today and it continues to be all good news. Dr. Etheridge was very happy to see how well he looked and how well he was behaving. He is doing the typical things a 9 month old would do and is looking great on the growth chart! This just confirmed what we already knew, our little boy is so tough! Dr. Etheridge thought it would be a good idea to get a finger prick on him to check his iron levels, which in turn gave us a high result in lead. From what he said, a normal reading would be below 10 and Mason's was 22. Not the best news, but Dr. Etheridge did say they got a new machine so it may be as a result of it not being done properly or the machine malfunctioning. Either way, we were called back to have a venous blood draw to send off to the lab in Albuquerque. Even though the plebotomist was a pro little Mason must have been having flashbacks to the hospital, he was terrified when she started to put the band around his arm. My poor baby was so sad! Thank goodness it was over quickly and I could get him out of there without having to ask to be discharged! I just whisked him away and now we wait for a few days for the results. If it is high after the lab testing then we would be visited by the State to determine what could be causing the unusually high levels. It's good to know there are precautionary measures in place. On the other hand, Mason's hemoglobin levels were great and again, Mason's surprised Dr. Etheridge with how good his numbers looked.

Our niece and nephew Kelly and Kenneth are here for a few weeks of vacation and we so now we have 7 kids at home! Michael is home from college as well and it has truly been great. Everyone is getting along, with the exception of Matthew, who has reached the terrible two stage at 5. Nonetheless, it is a great time to be alive as a full house makes for more fun!

Mason: Height: 28" Weight 19.10

I've got an angel

These past six days have brought a whirlwind of cries, shouts for Mommy, groans, and multiple trips to the bathroom for almost everyone in our little household. The flu bug, or something evil like it, had gotten a hold of even little Mason. My sweet boy would throw up every time he drank his milk. He could keep down both Pedialyte and Gatorade and so we existed on that for 2 days. Through it all Mason wasn't even phased. He continued being his cheerful, little self as soon as he finished spilling out everything he just took in! Those sweet smiles are doled out like candy to an eager crowd on a 4th of July parade. I call him my "Dolly Boy" because he is just so darn sweet and is just a doll. God let us have his little angel to fill our hearts with a love so complete you just couldn't ask for anything better.

When I weighed him yesterday, he had lost .4oz from our last visit to the cardiologist. Not bad, I would say. His 02 sat last night was 82, without the oxygen. That too, is pretty darn good. As far as appearances go, you would never be able to tell there is anything wrong with him. The shirt he was wearing to church yesterday wasn't buttoned all the way up and I could see his little "zipper." When I pointed that out to Matthew, he got a great kick out of it. He never really looked as Mason's scars like that before.

Mason is scheduled for his first physical therapy visit this week. The therapist is hoping to work on his rolling over/tummy time in order to facilitate crawling. He already has a preference for standing, with help, and really hates to be on his tummy. I think a lot has to do with the fact his mickey button is pushed into him when he is face down. Although I don't think we really need a therapist, it can't hurt to help him get pushed along towards either walking or crawling. That will certainly be a site to see.

Great Cardiology Visit 5-7-09

We had a visit with Dr. Goens, Mason's cardiologist last week. She held clinic in Las Cruces and we were happy to not have to travel to Albuquerque for this visit. The nurse had plenty of help in taking care of Mason's vital signs as Matthew was eager to help out. Surprisingly, Mason's 02 sat was 88! That was on .5 litre of 02, but was remarkable nonetheless. Dr. Goens felt it was time we allowed Mason to come off the continuous 02 and hold his own. We will continue to monitor his 02 levels and make sure he is maintaining them while at home. The oxygen tanks/concentrator will remain in case there is a need. Dr. Goens also discontinued one of his doses of Lasix and discontinued his Captopril and replaced it with Enapril, 2 times per day. Happily, we are making progress!

Now that he doesn't have the 02 cannula and cheek stickies, he looks darn good. His weight was 18 pounds and is therefore another reason to celebrate. We can discontinue the nightly g-tube feedings and see if he continues to gain weight properly. He is currently somewhere in between the 10th and 25th percentile for weight, which we will be glad to maintain. If you didn't know all about him you would never know what he has experienced. God has truly blessed us and we can see it in Mason each and every day.

A Normal Life?

Wow! It has already been a month since I lasted posted and I have to say that must be a sign that we have settled into another level of normalcy. That is if you consider having to still deal with 02- 24/7, meds and nightly g-tube feedings a normal life for an 8 month old. Although I don't think too much about all the "what ifs" that could happen to Mason, those possibilities are always there. Ernie tries to tell me not to worry. I shouldn't worry about what will happen to Mason. I don't worry about everything that could happen to the other kids, so I should be the same with Mason. That is just not realistic. The fact of the matter is, he only has 1/2 of a working heart, he will most likely always be on medications, he will most likely go into heart failure one day and need a transplant, he will probably always be immunocompromised and the list goes on. There is not a single other parent we know personally that can say they face these lists of "probabilities" in their child's future. Yet, here we are leading our newly defined "normal" life and he wants me not to worry. I'm just not there yet and maybe never will be.

I have mentioned to others that this journey has really put our lives into perspective. We have a house full of beautiful things, furniture, clothes, toys, etc. and we don't even need them. Since we have been home we have stayed more time at my Mom's and don't miss those things one bit! For some of us, it truly takes some kind of life altering event to make us realize what really matters in this life. I am privileged to say I have been part of events that I would wish upon no other, but that have led me to a closeness with God I have never had before.

Funny thing is, you would think that what has happened to us would be humbling but in some aspect the intensity of what we have lived through can almost make you feel invulnerable. I wonder once in a while if God will give us another little test and that normalcy and invulnerability will be a thing of the past. So for me, keeping the "what ifs" around can in some way keep me grounded.

I saw a little saying on a forum that I really enjoyed..

God gave him such a big heart, he only let him bring half.

Now that is optimism I can learn from!

So what do we do for Spring Break?

The realization of our new life has hit it's first obstacle and that is what to do for spring break. Although we only have little Mason and Jordyn here with us it has been extremely difficult to decide what to do. Besides trying to be ultra conservative with spending, basically everything we looked into involved too much of a hassle for Mason. Cruise-great but what to do in the middle of the ocean if something happens. Vegas-lots of people, have to cart 02 concentrator around. Scottsdale-same thing, plus I don't' think I would want him in any pools quite yet. Mexico-would be great to travel to a resort and have the kids meet us there but the US is warning against all travel into most of those resort cities-cartel violence. Camping-probably the best option, although the most work, and we still have to take the 02 and/or oxygen bottles along. No campfires for us! It's silly though, if this is an obstacle, we have to be one of the luckiest heart kid families on earth. After Mason's near death experience in December, he is doing well and we couldn't ask for more. So maybe this spring break will be spent at home or fairly close by...

I don't think I ever wrote about our first experience in finding out Mason had HLHS. It was a rolller coaster from the start, but then again whose story isn't? I had my 20 week ultra sound in Las Cruces at OBGYN and associates. Dr. Castillo had delivered Jaylen and Dr. Ortiz had been taking care of me prenatally with Jaylen and now with our new baby. As the ultrasound got underway, the tech had a puzzled look on her face shortly after she began taking a look at Mason's heart. And so the story goes, she walked out to bring someone with more experience in. The funny thing is that the cardiologist and high risk ob from UNM happened to being having a clinic there on that very day. ( UNM holds specialty clinics throughout the state on various months and God was certainly looking out for us as He put us all together at that moment in time. ) After confirming, what looked like a serious defect, the cardiologist, Dr. Beth Goens, asked us to go up to Albuquerque the following Tuesday to have a fetal echo done. I had resigned myself to believing that it couldn't be as bad as they were saying, critical aortic stenosis, potential lack of growth of the left ventricle, those words were not meant for our baby. I truly believed that his little heart would grow and show everyone how miraculous God is. Instead, God's plan for Mason was much greater as we would learn in just a few short months.

Ernie flew us up to Albuquerque early that next Tuesday and the flight was uneventful. Our hearts were filled with hope as we arrived for our visit. Ignorance is bliss. Dr. Goens described what she thought Mason's outcome would be once he was born, as well as the possible options we had: termination of pregnancy, compassionate care, palliative surgeries, or heart transplant. The more we spoke with Dr. Goens, Dr. Moore (high risk ob) and their nurse, Pamela, the more we felt they were pushing us to terminate the pregnancy. Today, reflecting on what they were saying, they must have had to be so insistent on a decision because legally terminating the pregnancy would have to be an urgent matter-I had only a matter of 2 weeks to decide if this was the route to take. They kept telling us over and over how difficult the surgeries were and how our lives would be drastically changed; how going through this pregnancy would result in our child having a lifetime of doctors visits, possible surgeries, draining of financial resources and most importantly affect the rest of our happy family. As the reality of the situation hit Ernie and I, we could only look at one another and trade teary eyed glances and our grip on one anothers hand melded us into one.

We left UNM and decided our plans to stay in Albuquerque overnight just didn't make sense. We wanted to be back at home with the kids-at least that would bring us happiness and we wouldn't be left alone with our thoughts. When we hit the run-up area on the runway, Ernie just sat there for what had to be about 5 minutes. The controller came on the radio and asked if Ernie knew where to go! So he snapped out of the fog he was in and rolled out to the runway and we got clearance to take off. Only a few hundred feet off the ground and gust of wind hit us and jolted us to the side. Thus began what would be the worst flight of my life. The beautiful, windless, rolling mountains we flew over just that morning began looking more and more like one huge black pit. The winds started gusting and hitting the plane from the east. It was like those demolition derbies where the cars just hit you relentlessly from the side when you are pinned up against the wall. My heart was racing and my grip on the back of his seat was beginning to make some serious dents! Suddendly the assault came from above and the plane dropped 1000 feet in an instant and I had enough. We were near T or C and I begged Ernie to land there. He checked the weather and found the winds to be gusting around 36 MPH/tailwind-not something you want to try and land in. I was so desperate to land, I kept asking isn't there anything else around here and then I heard, "Don't tell me my engine's gone". What?!! The plane began to sputter and I thought this would be it! I shouted out-declare and emergency-land!! After, shouting out a resounding, "Where???!!!???", Ernie just took control of the situation and began looking over his instruments and turning knobs-sure enough the engine picked right back up! Thank God. We didn't know what had happened but we figured we could make it to Deming and land there. When we started to descend in Deming the sun was right in our eyes. Just as we came closer to the runway, we noticed a large portion of it blocked off! Fortunately, Ernie handled the plane perfectly and set us down past the trucks and chevrons blocking the runway. We decided he would fly on to Silver City and then drive back to pick me up. I got a ride to the local Walmart and waited there for him. He never insisted I get back in the plane, and for that I am so greatful.

In the short time Ernie had been flying I had been able to rid myself of the fear of flying in a small plane. This experience left me wondering if I could ever get back in. Later, he realized he had leaned the fuel mixture too much and thus the engine was starving for fuel. The simple turn of the knob filled the engine with life. Simple decisions have big impacts-Mason was going to get our full attention and we would be choosing life, no matter how difficult it would get. We knew God would take care of us all. It, too, was a simple decision to make.

This single ventricle thing is a piece of cake

Mason seemingly glides along in his everyday routine completely oblivious to how special he really is. He's just a six month old who is happy, alert, reaching for everything and loving the tastes of new foods and drinks. I think we have learned a few little things during this ordeal and the most important ones that come to mind for me are 1) the rest of us haven't even begun to know what it feels like to have gone through so much and you think you've got problems?; 2)Mommy & Daddy are truly your best friends and advocates and in most cases will be there for you no matter what, so even if you don't wanna be seen with us later on-we'll be there if you need us, waiting on the sidelines; 3) the best things in life really are free-like smiles, kisses, coos and that sweet, innocent baby smell; 4) babies really are in charge; 5) God chose us to take care of his special, little boy and we have to take that honor and try to give him the best of the human spirit. We sure are lucky.

We had a 6 month pediatrician's visit Thursday and you know what that means. Shots! The regular round of 6 months shots, plus a flu shot. Mason has pretty much glided through all his shots previously and so this time around I expected the same. Poor Mason, he was blindsided and developed a fever of 102.2 by 12:00pm. After I stripped him down, gave him more Tylenol and some juice, we stayed up for a few more hours and he finally settled back to sleep. I'm guessing it must have been the flu shot that made him miserable. Dr. Etheridge was pleased to see how well he was doing and presented us with the fact that Mason, at approx. 15.04 pounds, was in the 10th percentile on the growth chart. Great news-we are still on the chart!

Mason is the superstar in that office, as soon as we check in the front, we are whisked back to one of the rooms in the back. Dr. Etheridge doesn't want him exposed to more germs and so he gets some special treatment. This includes getting the first in appointment. Dr. Johnson popped in to say "Hello" and take a look at famous Mason. He said he hadn't realized we were the family with the infamous kid.

Well, it looks like Mason may have some local company regarding his condition. Our ER nurse friend, Marsie, (Mason's Godmother) became aware of a young mother who is having her first child and she believes it to have HLHS. We offered to help in any way we could; especially sharing our experiences at Stanford as it appears that is where she will be delivering or taking the baby to once it arrives. Marsie said this young mother is completely devastated.

Many websites provide statistics that HLHS occurs in 2.1/10,000 of live births, and occurs in 7.5% of all newborns with congenital heart defects. Considering the entire county of Grant is approximately 13,000 to 14,000 people it is very rare to have 2 babies within such a short time and distance to have this particular heart defect. We can be thankful that we were diagnosed while the baby was in utero and that surgical techniques have improved over the years. I'm hopeful that if Mason ever needs a transplant, they will have been able to grow his heart from his own tissues/cells. In the meantime, Mason makes things look easy. I can't say enough how greatful we are to God for that and how thankful we are to have so many friends and family praying for us. We couldn't be more blessed.

Now, this is cute!

* Congenital Heart Disease Webring *
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Time Out

I had seen an advertisement for the upcoming George Lopez show to be held at Don Haskins Center in El Paso, TX earlier in the week. The last time we went to see him was 2 years ago with our dear friends, Bill & Marsie. Thinking of those fun times brought back some great memories and made me want to see him again. Of course, Ernie was up for going and for the next couple of days I debated whether or note we should go. Any decent seats were going for a considerable amount of money and I just couldn't bring myself to purchase them. As many of you know, we are the last minute type of people. Just about everything we do is last minute or we just can't get out of the house in time. So, to traditions sake I waited until 3:30pm on the day of the show to purchase tickets. Since Grandma is in Deming, I had given her a heads up and asked if she would be willing to watch Mason for a few hours. Even though the tickets hadn't been emailed to us before we left, we decided to go and figure it out when we got there. We packed up Mason & Jordyn and headed out to Grandma's. Since the show was at 8:00 I asked Jordyn and Grandma to give Mason his 8:00 meds themselves. So to make a long story short-we got there , were able to get the tickets and saw a pretty funny show. We got to Grandma's about 2:00 am and Mason had been asleep since 9:30pm. I didn't have the heart to connect his g-tube and set up his formula so I figured I would wait until he woke up hungry; which ended up being around 5:30am. He drank his bottle and went promptly back to sleep! This is the first time in his short life that he had not been fed overnight! I don't think we can do that very often though, those darn calories are too important and in order for us to meet our "goals" we have to hook him up for overnight feeds. It sure felt good to go out and have some fun and felt great to know how well he did without me!

We have occasionally followed a blog about Baby Gracie, who is another baby with HLHS. I just checked her blog and found out she had her heart transplant a few days ago. Unfortunately, it did not go well at all. Ironically, her new heart was not functioning properly once they put it in-the left ventricle was not contracting. So here they are again-basically in the same position where we all started-the left ventricle not working. Her parents made the decision to not let her suffer any further and took her off of ECMO. I found myself in tears thinking of how this sweet baby was leaving this earth and wondering if this would be happening to us anytime soon. When you have a baby with such a devastating condition such as HLHS it is so easy to get trapped into worrying about what the future holds. Reading blogs about children who haven't made it is the hardest of all ,but as I have said before, we have to have faith in God. Just like leaving Mason with my Mom the other night allows me to feel normal, leaving him in God's hands each day gives me peace of mind. For tonight, no more reading about anyone with HLHS.

Hope for children with Hypoplastic Left Heart Syndrome
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Day by Day

So it seems as though the events of the past six months are just a blur and thank God for that. Mason's oxygen tubing/tank prompts questions from just about everyone we meet and recanting those events seems surreal. Coming home and leading a "normal" life has made it easier to forget about all those trying times.

We had a wonderful dinner at our home with a couple of good friends this last weekend who just couldn't stop commenting on how good Mason looked. One of them stated she commended me for being so strong in dealing with his constant care. I had to say that we are so fortunate that Mason isn't really much trouble at all. Besides dealing with carting around his oxygen everywhere, making sure he has all his medications wherever we go and the g-tube feeding at night, he is no problem at all. God has blessed us with a happy baby who sleeps the entire night!

The economy has left us with a shortage of construction projects but this can certainly be seen as a blessing as well. By that I mean, I have more time to be with Mason! Attempts at going to the office and trying to deal with paperwork are certainly not on Mason's agenda and since Grandma has been in Deming, Ernie and I have been playing tag team when I really need to get paperwork done. All this makes for some hectic days but we wouldn't trade them for anything.

Twice last week Mason had evidence of central cyanosis-his tongue was extremely blue towards the back. At first I dismissed it due to the fact that I had given him grape juice but we noticed it a second time and were a little alarmed. Of course, this has made us hypervigilant, albeit we are not acting overly concerned. It may sound crazy to some, but we truly have put Mason into the hands of God. We only pray that God will give us the strength to deal with whatever may come our way and continue with our lives with as much normalcy as possible. Our happy family is just chugging along...

Cardiology Update

On January 28th Mason, Daddy and I traveled to Albuquerque to visit Dr. Goens, Mason's cardiologist. His 02 level was 85%. This is an improvement to what he had been running and we were glad to hear it! It is funny that the sat monitor will beep/alarm at a set point that most normal people would be in serious trouble! Yet, for Mason 85% is really pretty good. Since we were running late to the appointment we had to call and make arrangements with Dr. Fahl, Pediatric GI, to re-schedule us for a later time. Fortunately, he was glad to make time to see us the same day and told us just to let them know once we got in. Mason's condition sure gets some attention; unfortunately, it's not the kind we would wish on anyone.

After a review of his echo, Dr. Goens commented that it wasn't the best function that she had seen but that it was "fair." This is better than severely dysfunctional, so we will take it. Dr. Fahl suggested that we reduce the amount of calories per ounce of formula for Mason to 24kCal. Other than that, his G-tube site looked great and he praised us on doing such a wonderful job.

Dr. Goens eliminated the Aldactone from his medications which is great since this was causing him extreme gas and nausea. Since we have eliminated it, he has been doing wonderful. She also asked that we keep him on 1/2 litre of oxygen 24/7 until May. This should help heal his heart and get him through any congestion he may get from any viral illnesses. Having to carry around oxygen tanks everywhere we go is a bit inconvenient to say the least. I imagine Mason is a little tired of that tube being in his nose as well.

On antoher minor note, after many complaints/calls/emails to Dr.Etheridge regarding Mason's bowel movements (poop) he agreed to test it. So we collected a sample and got it sent off and low and behold it tested positive for C-diff. It looks like he hasn't gotten over it from being at the hospital. We are treating with Flagyl again and hopefully we can get it taken care of.

His current medications are:

Captopril 3 mls 3 times a day (increased from 2mls)
Reglan .8 ml 3 times a day
Digoxin .6ml 2 times a day (new med)
Lasix .9ml 2 times a day
Omniprozole 3 mls 1 a day
and baby aspirin 1/2 tablet 1 a day

I asked for his Captopril to be flavored and he loves it! It has actually gotten to be a treat for him to take his Captopril/Reglan/Digoxin/Lasix and baby aspirin as they taste great! The next time we get the omniprozole we will have to request flavoring as well. Since everything had been previously going through his G-tube, no one was concerned about taste.

It is probable that the medications have somewhat "masked" his ventricle function but we truly believe that there are forces that are allowing his heart to mend. God has gotten him this far, he can't back away now, we are counting on it.

Photo Album 1-25-09

Life at home...

As you all know we were discharged on December 31st and traveled to Albuquerque's UNM Children's Hospital for our cardiologist visit. We met with Dr. Love who briefly checked Mason over and sent us on our way. We were so relieved that we didn't have to be kept over night in the hospital OR in Albuquerque for that matter. Being home felt so good!

Our current hicough is that Mason has to be on continous oxygen. This has made our freuqent out and abouts a little more complicated. The doctors at LPCH explained they were hoping the 02 would help his heart heal. So far the best stat he has had was 83.

Once the kids got back from Mexico, Mason promptly caught their viral crud. Poor Mason has been so congested. His next visit to the cardiologist is this upcoming Wednesday. We pray things will look better on this next echo. I am so not ready to go back to California.

In the meantime, Mason has helped Matthew celebrate his 5th birthday and Jaylen her 2nd. we have so enjoyed having this sweet boy back home! Thank you God!