Tuesday, December 23, 2008

Santa's Visit

Santa heard from one of his elves that I really wanted a picture of Mason with Santa, but preferred not to take him to the mall. Too many germs!! So one night last week Santa showed up at our house for a short visit and photo shoot. The kids were thrilled and I was so happy to get a picture with all 5 kids together with Santa. Last year it didn't happen for poor little Mason was in the ICU. Thank you Santa and your elf who sent you!

Mason, you've come along way baby!

(This was last last year in the PICU.)

And this is happy little Mason this year! He looks so
much better don't you think?

Merry Christmas to all!

Friday, December 19, 2008

Tis the season ...........

( Mason's morning line up of meds, etc...)

Tis the season.... to be out Christmas shopping, wrapping gifts, baking cookies etc....... right? Well not really at our house. It is more like tis the season.... to be shopping at the pharmacy, earning 'flight miles' at the pediatrician, playing nurse, doing breathing treatments, and shopping online at midnight hoping your kids gifts will arrive before Santa does (who cares if they are wrapped at this point)!

These last two weeks we have had the 'sickies' at our house. Mason has had a really bad cough and cold which then led to double ear infections and a soar throat. (And a horrible diaper rash to top it off!) Mark had the stomach flu for at least 10 days. Braiden battles a croupy cough. And for myself, I had to get an emergency root canal. The other 3 in our family have stayed healthy at least. Knock on wood. I have decided Christmas should come in the summertime, when for the most part everyone is healthier!

On a more positive note.....Mason weighed 15 lb. 5 oz. this week at the doctors. Any little bit of weight gain for him deserves a celebration. Also, even with getting this nasty cold and cough, his lungs have remained clear and his Ox2 sats have stayed in the 'okay zone' this time. The inhaler meds are definitely helping. And at least we are home this holiday season and not in the hospital!

The other day I was able to leave Mason with an RN neighbor (and friend) to sneak off to my kids school to watch them participate in their Christmas Sing Along. It was great!! It also helped me get more into the Christmas Spirit. Nothing can compare to seeing the excitement in children's faces this special time of year.

I am grateful for dear RN friends who live near me (Kristi, Sammi, Kathy, Michelle) who are so willing to watch Mason for me.(Jean, you need to move down my way too !) Besides for leaving him for the kids' singing and my nasty root canal, Mark and I were also able to go to a few adult Christmas parties and an awesome Christmas Concert at the Junior High. We are so blessed still by wonderful service and support all the time.

And I must mention how beautiful it is in Utah right now. We have had a ton of snow and that always makes for a beautiful White Christmas Season. Not that the California girl in me likes the cold, but if its going to be freezing outside at least let there be snow for the kids to play in and to cover our dormant landscapes. Preston and Braiden have gone sledding everyday after school this week. It is great entertainment!

Hope your Holidays are Happy! Mason sends xoxoxox to all!

Wednesday, December 3, 2008

Bitter Sweet

(In all reality, I started this post on Dec. 3, but it has taken me over 2 weeks to finish it! Life is busy, I've mistakenly deleted it a few times, and this is a rather long post! )

Today, December 3 2008, is a year from the day Mason was Life Flighted to Primary Children's and diagnosed with Hypo plastic Left Heart Syndrome. It was a day that will always be vivid in my memories. A day that was like a bitter, awful nightmare. A day that changed our lives forever. As I reflect back upon that day, with tear filled eyes, I know with all my heart there were angels up above and angels hear on earth watching over our little Mason. A truly sweet miracle has taken place right before our own eyes. Our little Miracle Mason is alive today (in fact, asleep in my arms right now) to celebrate the day of his first trip by Life Flight!!!

(He had a second trip last April 3 which scared me horribly, but not nearly as grim as the first. I have told Mason several times since, "I am sorry Baby if you love to fly....but,please no more Life Flight trips!")

So, what happened on December 3, 2007? Some of you know the whole story or bits and pieces, but for a long time it was hard for me to talk about the details....thus I will retell what I remember from that day mainly for my own journaling purposes, but also for anyone out there looking for some hope whom may have a very sick heart baby at this time.

On December 2, when Mason was 2 days old we brought him home from the hospital. Although, before we brought him home a few things happened because of his heart problem, but at the time no-one knew his heart was the cause. He finally nursed a few times at the hospital but had a very weak suck and it would exhaust him. One of the nurses was worried about the gray coloring in his face, so she ran some blood tests, but they were all normal. The pediatrician on call was concerned about doing his circumcision, because of how overly sleepy and frail he seemed and how he wasn't eating very well. He thought it would be too much trauma to put him through at the time ( Which was a huge blessing, it definitely would have been too hard on his little half functioning heart!) and we decided to wait to do it in the Dr.'s office at another time.

The other major sign was that he didn't pass his car seat test (When a baby is 5 1/2 lbs or less they put him in a car seat hooked up to heart rate and oxygen sats monitors for 30 minutes too make sure that they are not so small that the car seat buckle is right at their neck causing decreased oxygen flow etc...) Mason's oxygen sats would drop after just a few minutes in his car seat, but when laid flat they were fine.....which is weird(That still doesn't make sense now because his heart function was the underlying cause not the car seat buckle!) His heart rate was fine and his heart sounded fine. So the pediatrician finally decided to send us home with ox2 just for when he was in his car seat for a couple of weeks and only set at 1/32 of a liter. ( I thought that was going to be a hassle! If I had only known what would happen the next day, I would have taken that "hassle" any time!!)

So several hours later than initially planned, we finally brought our sweet baby boy home to his big sister and three big brothers whom were all very excited. (Well maybe 2 year old Ammon wasn't excited, just quite confused!!!) It was a little bit after the car ride home he started to have a really weak cry and seemed to moan with every breath (But in all the excitement of coming home I didn't think much of it, except that maybe it was because he was so little. He was my tiniest baby). Then that night after getting everyone to bed, I couldn't get him to nurse or take a bottle, so I syringed some milk that I had pumped at the hospital into his mouth, little by little. And I did this throughout the night because he had no desire to eat, his moaning seemed to get worse and he was so cold that I wrapped him in several blankets and he still felt cold. I woke Mark up in the middle of the night and told him something didn't seem right, so he suggested giving him some Ox2 that we had for the car ride home. We did that, and I think it helped a little, but not much. By morning I was getting more worried. The first night home with a new baby is always hard, but this was beginning to feel much different.

After we got a couple kids off to school, Mason still felt so cold wrapped in at least 3 blankets, so I decided to take his temperature. It was just a little over 92 degrees F. Okay, at that point I knew something was wrong. I quickly called my pediatrician. The receptionist told me their soonest appointment wasn't until 1:30 pm and even when I expressed my concern she still wouldn't fit me in. (This does not happen anymore!! They have all been well trained now! Especially when I call.) When I hung up my mother's intuition took over and I began to cry. I knew I had to get him to the doctor right away. I called back and said I do not care which doctor we see I am bringing my baby in right now. She just said "oh, okay I will let a nurse know". And in the mean time my mother-in-law, Grandma Marilyn, stopped by to offer me help, which she has never done before, only because I'm so independent I always say "I'll be just fine" after I have my babies! So she was able to keep our two boys at home and Mark was able to come to the Dr. with me. Which he also had never been to the doctors with me and any of our kids before. Amazing how things happen isn't it?!!

At the pediatrician, when we showed up they took us right into a room. Fortunately, the nurse who first started to take Mason's vitals etc... was very experienced and used to work in the NICU at American Fork Hospital. (I had never seen her at my ped.'s office before and never since!!) She quickly became quite worried and went to grab the doctor. Dr. Knorr came in and began to asses him and ask us questions. Mason's temp was now 88 degrees F. (not good!), his Ox2 sats were below 90 (not normal for a healthy baby, but better than he even has now), and Dr Knorr couldn't feel a pulse (not good at all!). So he excused himself and said he would be right back. A minute later he came back with Dr. Whiting, the doctor we normally see, and explained they were both very concerned and had called the ambulance. At that moment it really hit me! My baby was very sick. I began to cry and I don't think I stopped for the next 48 hours (or more!)

As the nurses were running in and out with warm towels to wrap around him, and Dr. Whiting was filling dr.'s gloves with hot water (homemade hot water bottles) to put around him in the towels, Dr. Knorr was explaining to Mark and I different scenarios of what might be making our baby so sick. He said his little body seemed to be shutting down and that possibly he had caught an infection during birth. This is how they would begin to treat him at the hospital...with some IV antibiotics. Also he was probably dehydrated from not eating very well so he would get some IV fluids. Then he said if this does not seem to help there could be some kind of heart condition. Even hearing it could be his heart, I fully believed it had to be an infection and that the antibiotics would solve the problem. (Wow, was I ever wrong....I am sure now this was the beginning of my denial process!)

The ambulance came and I got to ride in the ambulance holding Mason. Mark followed in our car. They rushed us to the American Fork hospital where they wheeled Mason and I on a stretcher
straight up to Pediatrics Unit. They had a little infant bed already warmed up for him and immediately got him going on his IV's. And they got him on some oxygen (he was in the ambulance too)They also called a respiratory therapists to come asses him because of his declining Ox2 sats. Mason began to look a little better as he warmed up under the heat lamp. As the news quickly spread around the family, my mom came to be with us and also two of my brother in-laws came to assist Mark in giving Mason a blessing.

Then after being there for about 30 minutes around 12:3o pm, I was standing by Mason asking the respiratory therapist some questions, Mason's little chest began to rise rapidly like he was struggling to get air ..........the monitors began to beep and his heart rate "flat lined"! The RT began to do CPR on him as she screamed out CODE BLUE. I felt like everything was spinning around me! Was this a nightmare or was this really happening?! My baby's body had "crashed"!Was my baby dead or alive?!

They asked Mark, my mom , and I to leave the room. ( My brother in-laws had left the hospital to return to work right before the code blue episode). They were paging "CODE BLUE in pediatrics" over the hospital intercom and probably 100 medical personnel came running to see how they could assist. I just wanted to be with my baby. I wanted to hold his hand and tell him how much I loved him... and tell him to please stay with us! Then a social worker came and introduced himself, said he was there to assist us through this, and moved us down the hall a little so that we were not in the way of all the doctors and nurses running around. When he said he was the social worker I thought for sure Mason was dead...and I began to sob even harder. This is definitely a moment Mark and I never want to relive again. The social worker then explained to us that Mason was still alive and that he would continue to report to us as they tried to stabilize him.

I can not remember clearly the "minute to minute" of what all took place over the next hour because of the shock of possibly losing my baby. But what I do remember is closing my eyes in the middle of all the chaos and pleading to my Heavenly Father to save my baby's life. I needed him to live!! I knew he had been sent to our family for many special reasons ( ie: one feeling I felt very strongly throughout my pregnancy was that this baby was going to help our little Ammon somehow with his dev. delays. I should post about this another time) so how could he being returning home to heaven so soon?! I struggled to keep faith and hope in his blessing he received just moments earlier, which blessed him to have health and strength. I continued to pray in my heart to have faith that he would live!

Only 10 minutes after the CODE BLUE, Dr. Knorr (from our ped.s office) came running up the back stairwell, to assist in Mason's care. The Social worker continued to report to us that Mason was still with us. Soon, Grandma Marilyn (Mark's Mom), showed up to be with us as well. She had left the kids with an aunt. Then after what seemed like a very long time, Dr. Knorr came out from Mason's room to explain to us what was possibly wrong with Mason and how they were stabilizing him. They knew now that it was something wrong with his heart that had caused his body to shut down and crash. They had immediately got him on the ventilator (life support) and soon there after had started giving him Prostaglandins through his IV. (Thank goodness he already had his IV in place!) He explained that the Prostaglandins were a hormone to help keep open the PDA valve in his heart, so that blood and Ox2 could continue to flow through out his body. The PDA valve is the valve through which in uetero the Mom pumps the blood for the baby. This valve closes between 2-7 days after birth, because the baby's heart is pumping on its own with no need for that extra valve once the baby is born. But the assumption at this point was that Mason's heart wasn't functioning without this extra valve open. This was so much to take in while in shock!!

We were then told Life Flight was on its way to transport him to Primary Children's Medical Center. There they would do an echocardiagram on his heart to accurately diagnose him, and keep him their for his treatment and care. Once the Life Flight team arrived it took them at least an hour (which felt like 10 hours) to transfer him from the hospital equipment to the baby incubator used for transport and the Life Flight's equipment (ventilator, medicine pumps, oxygen, monitors etc...) needed to keep him alive for his flight. The head Life Flight nurse came out to talk to us and explain how they were stabilizing him and to reassure us he would be in good hands. And then truly devastated, I found out I could not go with him on the flight. How could this be? I wanted to be with him!! We would have to drive ourselves and meet him there. It would only take them 15 minutes, but us 45 minutes!! They would begin diagnosing and treating him immediately upon arrival.

Mark, both Grandmas, Dr.Knorr, and I all followed Mason and the Life Flight team out to the parking lot to see them take off. As the helicopter took off I knew this would be the longest 45 minutes of my life!! This truly seemed like a very bad dream when I watched the Life Flight fly away with my newborn baby.

When we arrived at Primary Children's we went straight to the PICU where Mason was already being treated. As the receptionist showed us to his bedside I was in shock at what I was seeing. I had never been in an ICU before and all the machines, monitors etc. were overwhelming. Then talk about overwhelming..... was the action going on around my little newborn son! There were at least 25 doctors and nurses surrounding him, all busy working to stabilize him on different machines and medicine pumps. We could hardly see his little 5 lb body under all the wires, breathing tube etc... My tears continued to stream down my face as I watched this. Even when the attending doctor introduced himself and tried to reassure us that Mason was stable I cried and cried with fear for our babies life!

We had arrived at Primary's about 3pm or so and it wasn't until about 8pm the PICU attending Doctor and a Cardiologist sat down with us to explain the diagnosis. We also had been joined by Mason's grandparents, an uncle, our Bishop, and a neighbor friend who works at Primary's. It was great to have them there for their support. So they first explained it took them so long to get an accurate echocardiagram and diagnosis on his heart, because when his body shut down and crashed it caused all his other vital organs to malfunction as well. They needed to get him on meds to stabilize his other organs enough before they could really tell what was going on in his heart. Because when he first arrived his heart was in "heart block" from the crash, but this wasn't his true diagnosis. They had to let things settle down in his little body first.

They explained that the Mytral valve in his Left Ventricle is less than half the size it should be so the blood couldn't flow efficiently from his left ventricle, thus basically his left ventricle does not work right. That is why when that PDA valve (we had been told about earlier at that the AF Hospital) closed his body completely shut down. His body wasn't receiving the blood and Ox2 he needed to live. So what did all this mean?? They drew pictures to help us understand, but at the time it still all seemed like a bad dream, and too complicated to understand right then!

The Cardiologist then talked with us about our baby's options. In order to live with this heart disease he would need open heart surgery, but the surgeons would not operate on him in the state he was in at that time. His other organs would need to be functioning at almost optimal levels in order to survive the surgery. They talked about the risks of operating also on a 5 lb. baby and a baby that had gone through the trauma he had just been through,( let alone the risks on a not so sick baby just to go through open heart surgery). Then they gave us an option that I couldn't believe we were offered.... to not operate and to see how long he could live in the ICU on heart medicines......which would be at the most a couple months! I was almost angry to hear such a thing. I would do anything to keep my baby alive!

By 10 pm the doctors, nurses, and our family talked us into going home to get some rest. It was so hard to leave Mason there, but I knew we had 4 other kids at home that were devestated and needed to see us. The nurses assured us he was stable and if there were any emergencies in the middle of the night they would call us. So I held my baby's hand, kissed him on the forhead, pleaded with him to still be there for me when we returned in the morning, and closed my eyes in prayer also pleading with my Father above to save him. (little did we know at the time, but found out a few days later as he recovered from the "crash" and his body stregthened enough for surgery a week later, the docs and nurses were all afraid he wouldn't make it through the night!! He sure showed them! What a fighter!)

I have learned alot reflecting back upon that day and and this whole last year. I had always been taught growing up in our church that Christ never said life would be easy but that we would never be left in the 'storms' alone. He would always be there to help us. And I know this withou any doubt now. Some truly amazing things took place that day which played a role in Miracle Mason's survival (like I said before angels were protecting him). For one was the timing, If I had not followed my heart and insisted on taking him to the doctor when I did he would have died that day at home. I also know the right doctors and nurses were all in the right places at right time that day. I know his Life Flight nurse was the Best of the Best! I now the amazing nurses that watched him through the nights and days in the PICU when he was so sick were there for a reason also. They are all so smart and amazing. I know My Heavely father comforted little Mason and our entire family that day and gave us strength to endure what lay ahead.

This story of Miracle Mason's Life Flight Day is a great part of why I always say "miracles happen and prayers are answered"!

Tuesday, December 2, 2008

Birthday Pictures

Here's a couple from Thanksgiving and his early b-day celebration:

And here are some from his birthday celebration we had the day
after his birthday, on Dec. 1st. We had two special nurses from Primary's
PICU who were able to join us! Thanks Jean and Kristi! And thanks to all the
others who also helped make this a special day!

What a cute little one year old you are Mason! We love you!!
We look forward to many more birthday celebrations too!!