Baby T's Journey

Superboy

2011-10-21T12:19:00.000-07:00

October 18, 2011

Daddy, Jaylen, Mason and Mommy flew to UNM to Mason's cardiology appointment. He was such a good little boy! He did everything he was asked, without hesitation. In the above photo he is getting an electrocardiogram and as you can see he was as happy as can be.

For those of us who have never experienced painful surgeries or spent much time in the hospital, it can be hard to comprehend why there would be any difficulty in such routine tests. It's often called the "blue" glove syndrome. (or purple as it was known at Stanford) After being through such painful experiences, these little ones are afraid of anyone wearing gloves. It's not just the white coats, it's the nurses, echo techs, radiologist, urologists, blood techs, etc that come around with those gloves. Once they're in sight, it can only mean another round of testing for one thing or another. The best part of having been away from those days is that Mason has completely let go of those fears.

As for his tests, everything looks as good as it can be. His echo shows his right ventricle working, while his left is a small, empty chamber; still and lifeless. His tricuspid regurgitation is about the same as it was before. He is 14.5 kilograms with socks! The goal is to reach 15 kilograms, as this is the magic number for which candidates for the Fontan need to arrive at.

Sometime next spring we will have to have his heart cath done. This evaluation will determine whether or not he is a good candidate for the Fontan. The Fontan will be the last of the staged surgeries and will connect the lower vena cava directly into the pulmonary arteries. This final stage will pump all his blood into his lungs first to pick up 02. The result should be that his oxygen saturations will increase.

For those of you who aren't aware, there is no fix for what he has. Once he is done with the Fontan the surgery, they will not have "fixed" anything. He will have a single ventricle working in his heart and blood flowing directly into his lungs first..this is nothing like us "normal" people. It is called a pallative repair-it allows him to live.

There is no guarantee he won't have another surgery or won't need a transplant at some point. In fact, the oldest survivors of these series of surgeries are in their twenties and there aren't a ton of them! Dr. Norwood pioneered the series in the 80's and each of these little patients present their own oddities. It is not a simple fix...but I guess there aren't many things in life that are simple. That's what makes us so interesting.

Ahh..the eighties..what a great time. I would have never imagined we would have such a beautiful boy that God has graciously entrusted us with. I wouldn't go back to save the world.........

No time to waste

2011-10-09T09:45:00.000-07:00

Birthday #3 was here in no time. We haven't even given much thought to all the events in the past. For me, they aren't even vivid memories I try to forget. They are simply times past for which I am thankful that God gave us the strength to get through.

These days life is pretty much extraordinary...extra ordinary in that we have been so fortunate to have Mason as healthy as can be. We don't worry or wonder if he can do something or whether we can take him somewhere. We just do.

Later this month we will take Mason up to Albuquerque for another checkup and echocardiogram. We hope to see that things are working just like they should in his little re-built heart. Each of these "normal" visits gets us closer to his next open heart. It will be so difficult to turn over our beautiful boy over to the surgeon..he's going to wake up and wonder why his Mommy and Daddy let this happen to him. Thinking of that breaks MY heart...

Thinking back to when Mason came back home from his Glenn in 2008, he was hooked up to oxygen 24/7...we took him to church, to the store, to the kids games, to just about everywhere we could. His blue little face had the sweetest little smile. It still does today...

Mason riding the Rail Runner to Santa Fe September 2011

Big Boy

2010-11-10T15:20:00.000-08:00

Mason had his most recent cardiology visit on 10-26-10 in Albuquerque. Here he is getting an echocardiogram of his heart. From what we were told his function looks good and the leakage in his valve isn't any worse. He was such a good boy and did everything he was asked. All the fears from being poked & prodded not that long ago have seemed to disappear. The bad news is that we will have to prepare ourselves to make a decision on where we want to take Mason for his Fontan surgery next year. It is so hard to imagine that we have such a perfect looking little boy that will HAVE to have another open heart. If I could only give up something of my own so that he wouldn't have to go through it I would. Every little moment with are with him has to be cherished.

Mason's cardiologist says she believes that we just have to pick someone we trust and then just go with their recommendations. As Ernie pointed out, there aren't a hundred Dr. Hanley's that will be there to take care of him and we have to weigh all our options. We know the best thing would be to have the same surgeon operate, right? I guess we know, actually, we don't, that's just what they tell us. What we do know is that we have faith that God will guide us to make the right choices. One I can't say we are ready to make right now.

The Big 2

2010-10-08T15:38:00.000-07:00

Our beautiful, little boy is pure heaven on earth and just hit another milestone-he's 2 years old and doing great. This last Saturday we all traveled to Albuquerque for the LPCH-UNM family picnic. It's filled with little ones who have traveled to Stanford from NM for heart surgeries. What a great thing to see so many children given a chance to grow and experience this wonderful world. It truly is a great time to be alive.

Mexico

2010-07-09T14:27:00.000-07:00

So the kids are in Mexico-including little Mason! The kids, my Mom and I left to Monterrey on June 17th and I stayed a few days to make sure Mason would be ok. I really didn't think he would have any problems but it made me feel better going & I love going to Mexico.

My aunt, Magdalena, who is a retired pediatric charge nurse, has taken Mason into one of her Dr. friend's clinics to check his 02. He was between 88 & 89%, which is fabulous! The lower elevation seems to have made a difference in increasing his 02 sats.

Ernie finds it so important to have the kids learn Spanish that he is all for having them go each summer as I did when I was young. The food, the culture, the buildings, the landscape are all so inviting. Then you have the norm-like the Home Depots, the Chile's, the KFC's delivered to your door, if you please. It is simply the best of both worlds and I wouldn't mind living there.

In the meantime, Ernie & I are basically like newlyweds, just the two of us. Sure, Michael is here but we just take off whenever we want-no real schedules, no shuffling kids, no medications to give, no listening to arguments. While we truly love them all, we are enjoying that new found freedom. Ernie flew us to Las Vegas for the 4th of July holiday. Although I am still apprehensive about flying, it was great to be there in just a mere 3 hours or so. We staked out a little piece of concrete in front of Cesars and watched their beautiful fireworks display. Too bad the kids weren't here to see that-they would have loved it.

Just a week before the kids left we all drove to Disneyland and Vegas. I think it was a perfect road trip but my other half didn't seem to think the same. The kids actually did wonderfully while watching their DVDs but for Ernie, he felt the road trip was too long. I have to remind him that he has to find the good in everything and to me it was great that we had a new vehicle and that we were able to take the time to take the kids on a wonderful adventure. The most enjoyable part of Disney is that we were able to do almost all the rides in one day. Sounds impossible, but I described Mason's condition and we were able to get a Guest Assistance Pass. This allowed our entire party to be placed at the front of the line and we waited only a few minutes for the majority of the rides. It was perfect as Mason loved each and every ride and didn't get overheated waiting in the sun. We made some time to visit the ocean but with it's frigid waters, Mason didn't really want to get in for long. His one venture in the water caused his lips and fingers to turn purple and his body to shiver. He was such a die hard as he didn't want to leave and was content to dig in the sand with Jaylen.

I just have to keep saying it in almost every post.. God is so good.

Ordinary Day

2010-05-14T09:58:00.000-07:00

Mason had a simple cardiology visit on April 27th! A little crying because of the nurse and her probing equipment but he looked so darn good that the cardiologist felt he was doing well enough to leave things alone. No changes in meds, no echo. From our last visit, they had scheduled to have an echo done up at UNM on this visit, but apparently we will be waiting to have it done in October instead. God is so good!

We flew up to Albuquerque in the morning and since the visit was so short we stayed until the evening and flew back home the same day. While passing near T or C the full moon lit up the lake and the glow just lit the way. It was like a little mirror on the ground relfecting the mountains and moon. We did have a a little distraction though. About 45 minutes in the air Mason got upset and threw up! It was just what he needed as shortly after he fell fast asleep. It wouldn't be our lives if something a little out of the "ordinary" didn't happen though. I'm just so thankful for it all.

Time

2010-04-14T10:43:00.000-07:00

I've just realized that I have neglected Mason's blog and that is one of the cardinal sins of blogging. "They" say that in order to have a good blog, you have to commit to posting something often. As most of us know, that isn't so easy when you have so many kids, work and everything else going.

Time seems to find you when you are in a hospital room awaiting the next test, poke, cry, good news, bad news and everything else that comes along. In the meantime, we are busy leading our lives with what seems not enough time for everything we are trying to do. It's funny how when you are in the hospital the world just goes on without you and that includes your family. Everyone else is busy still going to school, doing homework, dealing with the next "crisis", having a great time and even sometimes a bad time. So how is it that all that doesn't seem to exist when you are in the hospital and all you have is time?

In business, one of the main themes you hear when someone leaves a job that they thought only they could do, is that no one is irreplaceable. There is always someone to come along that can do your job and maybe even do it better than you did. There is nothing like hearing, "Oh yeah, we found your replacement and they are doing great!" to set you in your place. I think that theme of "replaceability" translates into aspects of every day life. As a Mom or Dad, someone else could do your job, maybe not the same, maybe better. In time, you can be replaced and perhaps even dare I say, forgotten. So what do you do with the time you are here? What do you do with the time you spend with your kids? With your parents? With your friends? I think it's not all about how much time you spend with them that makes the most impact but the quality of the time. I think it's easy to forget that when you are running around trying to get it all done.

For me, reality check comes when it's time for Mason's next cardiology appointment and we are hoping for the best outcome. All I am hoping to hear is that he has more time- more time before his next scheduled appointment, more time before his next surgery and more time without new meds. His next appointment is April 27th and I'll be praying to God for more time, and if he gives it to us, I'll be praying that He gives us the smarts to make the most of it!

Gotta love it!

2010-02-02T12:55:00.000-08:00

So our little trek to Las Cruces for Mason's echo on January 14th didn't really lead to much info at least not how I see it. We were about 20 minutes late to our appointment and the echo tech had a limited amount of time to work with Mason. Mason didn't seem to care that things were time constrained as he didn't want to be there to begin with. As soon as the tech/nurse began trying to do his echo he started crying and promptly threw up on her. He wanted no part of her touching his chest. I attribute this to the fact that he has been getting his monthly Synagis shots, one in each leg/muscular, and he is now acting out against all nurses. So after she got cleaned up, we tried to have him sit still and finish up but we weren't the star pupil for the day.

As a result of his fitfullness they didn't get exactly the best view of his heart but from what Dr. Goens could tell things looked pretty good. His function was good, his aortic arch was open/not constricted but she did see that his right ventricle is moderely hypertrophied. This means there is some thickening of the right ventricle. As explained to us, this might just be to the fact that when the Norwood was done and subsequently the Glenn his heart has changed in size. The Norwood requires the ventricle to enlarge more/do more work and the Glenn less. I can't really explain it but it makes sense to me. From what Dr. Hanley told us before about the heart remodeling, this sounds like what it could be. The tricuspid regurgitation was increased but was also attributed to his crying. As for his weight, he is 28 pounds which is wonderful as this places him in the 50th percentile. He was previously in the 25th percentile so he has made enormous progress without the g tube. We will continue to be off the digoxin and will have another echo in April to determine if this is still the best course of action.

Mason at his Mountain View Hospital, cardiology clinic.

A few days later Mason must have recalled his experience as he used the sat monitor to give himself and echo! I think next time we will just ask the nurse for the probe and let him go at it himself. Just gotta love it all!!!

'Tis the season to be thankful

2009-12-04T11:10:00.000-08:00

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...

2009-10-29T21:04:00.000-07:00

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

2009-08-21T12:50:00.000-07:00

2009-08-19T10:46:00.000-07:00

Happy Birthday Baby T

2009-08-19T10:22:00.001-07:00

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

2009-08-14T16:44:00.000-07:00

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

2009-07-23T19:14:00.000-07:00

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

2009-07-11T23:24:00.000-07:00

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?

2009-06-18T13:51:00.000-07:00

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

2009-06-10T16:52:00.000-07:00

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

2009-05-18T23:52:00.001-07:00

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

2009-05-11T22:45:00.000-07:00

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?

2009-04-19T00:18:00.000-07:00

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?

2009-03-19T00:15:00.000-07:00

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

2009-03-07T02:42:00.001-08:00

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!

2009-03-04T21:53:00.000-08:00

2009-03-04T14:54:00.001-08:00

* Congenital Heart Disease Webring *
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Time Out

2009-03-03T00:12:00.000-08:00

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.

2009-03-02T22:52:00.000-08:00

Hope for children with Hypoplastic Left Heart Syndrome
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Day by Day

2009-02-27T22:33:00.000-08:00

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

2009-02-11T12:32:00.000-08:00

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

2009-01-25T15:23:00.000-08:00

Life at home...

2009-01-25T14:53:00.000-08:00

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!

So this is Christmas

2008-12-29T22:55:00.000-08:00

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?

2008-12-22T21:54:00.000-08:00

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

2008-12-17T23:01:00.000-08:00

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

2008-12-13T22:39:00.000-08:00

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

2008-11-11T17:08:00.000-08:00

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

2008-10-08T13:05:00.000-07:00

Homeward Bound

2008-10-06T14:43:00.000-07:00

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

2008-09-24T23:07:00.000-07:00

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

2008-09-22T18:21:00.000-07:00

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

2008-09-15T20:22:00.000-07:00

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

2008-09-10T13:47:00.000-07:00

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

2008-09-05T22:30:00.000-07:00

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

2008-09-04T16:19:00.000-07:00

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

2008-09-04T11:57:00.000-07:00

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

2008-09-03T17:42:00.000-07:00

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

2008-09-01T00:48:00.000-07:00

Too much of a good thing

2008-09-01T00:35:00.000-07:00

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

2008-08-30T15:04:00.000-07:00

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

2008-08-28T17:42:00.001-07:00

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

2008-08-26T19:14:00.000-07:00

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

2008-08-23T17:50:00.000-07:00

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

Surgery Day

2008-08-23T16:50:00.000-07:00

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

2008-08-20T20:41:00.000-07:00

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

2008-08-20T13:14:00.001-07:00

Baby Mason August 19, 2008 5:50 pm

2008-08-19T23:49:00.000-07:00

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

2008-08-19T23:12:00.000-07:00

Strike 1

2008-08-18T19:52:00.001-07:00

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

2008-08-17T23:20:00.000-07:00

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

2008-08-13T21:48:00.000-07:00

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

2008-08-11T21:01:00.000-07:00

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

2008-08-10T21:25:00.000-07:00

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?

2008-08-02T17:52:00.000-07:00

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

2008-08-02T12:28:00.000-07:00

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!