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!!



Sunday, November 30, 2008

Happy Birthday Mason!


Wow! Has it really been a year? In some ways it seems like just yesterday we were in the PICU at Primary's for his first surgery and in other ways it has been one really long year.
Mason was an itty bitty 5 lb.s 8 oz. when he was born and has been through a lot, but come a long way! When he was born and I held him in my arms just like my other kids, those most amazing unforgettable "Mommy Moments", something was a little different about him, but had no idea that he had a serious heart problem! He was a bit blue, but we all figured it was bruising possibly from his fast birth. He didn't nurse well right away, but all my other babies had. We just figured he was just tired and maybe because he was so little, not because he just didn't have the strength due to his failing heart function. It seems like a dream just remembering all this! Mason even got a normal score on his apgar test. But over the next few days it all went down hill from there.
I took Mason on Friday to his one year old check up, which was a celebration in itself just to be there!!! He weighed in at 14 lbs. 14 oz. (I was hoping at least for 15! Maybe I shouldn't have changed his wet diaper before!) And he is 26 1/2 inches long. He is almost on the growth charts, but at least his growth is steady. He has come a long way for a 5 lb heart baby!
He is still nursing and eating more and more baby food and a few finger foods. No new tricks for his motor skills, but hopefully we can get him crawling soon.
We celebrated with a few family members on Thanksgiving and will have another little celebration tomorrow night. We have invited a few of the amazing people who have helped in Mason's care this last year, over to our home to help us celebrate this miraculous first birthday. I will post pictures of Mason and his birthday celebration in my next post.
On this day of November 30th, 2008 I am more grateful than words can express for the special blessing Miracle Mason is in my life. Miracles do happen! And prayers are heard!
Happy Birthday Mason Andrew!

Thursday, November 27, 2008

Mason's First Thanksgiving

A year ago on Thanksgiving I was at the point in my pregnancy that I was anxious to have the baby (but not due until Dec 21). I was ready to be done with the nausea, puking and migraines!! Although, as I look back now if I had known what my poor baby was going to go through and the hardships we would face, I know I would not have been so anxious to have him born early (not that I could have controlled that though really). I would have stayed pregnant as long as possible. He was much safer inside of me!

Also, little did I know how grateful I would be that my baby would live to see his first Thanksgiving! I have realized how much we take for granted when we have healthy babies and children. Normally, we wouldn't think twice about the miracle of reaching each first holiday and each birthday.

So on this special Thanksgiving day little Miracle Mason I want to tell you how grateful Mommy, Daddy, your sister, and brothers are to have you in our lives! We are grateful for your health and strength, as good as could be with only half a heart!!!

Please hug your little ones and cherish every holiday you have together.

Happy Thanksgiving to all. We are so thankful for all your love and support. We are so thankful for the service continually given to our family. We will feel forever in debt for all the service we have recieved, but hope to pay it forward someday!

Friday, November 21, 2008

Spoke Too Soon




Okay, so I think I jinxed myself. Not even 48 hours after after my last post, when I bragged that Mason was "cough free", his "little bit" of a clear runny nose turned into a yucky green runny nose with a new horrible, nasty cough!! I've also had Ammon home from Preschool for several days because of a runny nose.....so needless to say there has not been a spare minute for blogging. Mason is still cough a little, but finally starting to feel better.


Early last week I took him to see his Pulmonologist for a checkup appointment that had already been scheduled before he got sick. Although he had just come down with this new cough, the appointment brought us good news. His chest x-rays showed that the fluid he has had on his left lung since at least July is finally dissipating and his airways were not as constricted as last a month. The other good thing is that his O2 sats have stayed up even while sick this time. The inhaler meds must be helping. But as the week went on he seemed to get worse, so I took him to the pediatrician who started him on antibiotics for bronchitis and the beginnings of Pneumonia again!!! Although, I do think the inhaler meds helped him not get as sick this time. ( In all reality, I think Mason just likes sleeping with me in the Big Red chair rather than in his own bed!! Little Stinker!)


Overwhelmed

So in the craziness of the last 2 weeks, having Ammon home from preschool and Mason not feeling well.....Ammon making Mason cry all day, sometimes innocently trying to give him loves, and sometimes I think on purpose out of pure jealousy.....I think I hit my wall for the first time in 11 1/2 months!! It is okay to be overwhelmed right?? 11 1/2 months ago Mark and I jumped into being "Heart baby" parents completely blindly, already having a full plate with our other 4 kiddos and the normal stresses of life in itself. Everyday I've done what I've had to for Mason and my family, because of the love of Motherhood, and because you just naturally do what you can to stay above water when life throws you a storm. Then a couple of days ago I had a melt down. I felt like I was crumbling, with lots of tears, feelings of exhaustion, and overwhelming concern of the "hows & whys" of having 2 kids with special needs and 3 others with lots of needs as well. I felt like I was sleep walking in a nightmare!!!
The next day brought a new day, a new beginning kind of, and I felt better. I guess hitting the wall is necessary sometimes so you can pick yourself up and start over with a new attitude! Crying it out is good too, at least it helps me. Because so many people say to me "I don't know how you do it" .... just thought I would let everyone know that I do crumble at times in the midst of my trials. I have plenty of sad days, and tough days all the time. Probably more than I let my appearance show! But, I wouldn't trade my shoes with anybody.



Thankful For....

Today I am thankful for many things, and here are just a few:
1) Faith in a Father Above who comforts me.
2) Mason slept 4 straight hours last night.
3) Sammi (my helper from the summer), Still comes to visit and help after she has already worked all day. And offers to take Ammon with her to run errands.
4) The young women who come over after school to play with Ammon and/or
help my kids with homework.
5) Friends who call and say"I am going to Costco. Do you need anything?"
6) Another heart baby to whom I was able to give my extra frozen 'mommy milk'
7) A kind neighbor who shows up at the back door with a huge yummy chicken pot-pie
for dinner. She must have known otherwise it would have been cereal again!!
8) Helpful, loving Grandmas who live near us.
9) Mason will be 1 year old next week on Nov 30th! A true miracle!
Have a great weekend!! And Go BYU in the big game tomorrow!

Tuesday, November 4, 2008

Mason's First Halloween

As you'll see below I never really decided what Mason should be for Halloween. I know if Mason were to choose between the bear, the mouse, or the skeleton T-shirt he would choose the T-shirt. He didn't like being in the other costumes very long.
The week before Halloween the Strickland extended family had a big Halloween Bash at Grandma Marilyn's so I took Mason to Aunt Michelle's house, who lives right next door to Grandma M, for a little while, so we could see the action but not take him into the crowd. (That is the picture below that I am in with the kids except Kaitlin was over at the party and not in our picture).
Then on Halloween night we went to a "Trunk or Treat " in our church parking lot. So Mason got to see the action from the back of our Suburban. The kids had a fun Halloween and loved dressing Mason up. So for Halloween '08 Kaitlin was a 50's Diner waitress, Preston was a professional Skateboarder, Braiden was a football player, Ammon was "Hot Wheels" the race car driver, and Mason was ...well a Mouse, Bear and a Skeleton I guess.



HALLOWEEN 2008










Sorry I have not blogged in awhile about little Mason. For one, time to sit down at the computer is hard to come by in my life and second my computer has some serious problems and we even just replaced the hard drive. Bummer, I think we might need a new one. Santa are you listening???



However, Mason has been cold and cough free for 2 weeks now! Yeah for Mason. The inhaler meds seem to be helping. He has a bit of a runny nose and has been fussy in the wee hours of the night (whats new right? I now keep a pillow and blankets in the family room all the time for Mason & I for our nights in the Big Red Chair). But, he looks really good. His coloring is pink, he's eating baby food well, sitting up great, rolling some, and jibber jabbering alot. It's so fun to see his sweet personally begin to blossom. We feel blessed he is doing so well right now.


We appreciate our own trials when we look around us and see the trial of others. Our family has been remembering in our prayers some dear friends and want them to know we love them and feel for them during their times of trials. Two of these are other Hypoplastic Left Heart Syndrome babies. Gracie had to postpone her 2nd surgery until January because of complications. What a stressful time it has been for her family. And Owen has become a candidate for Heart transplant because of complications. Now his family is faced with some big decisions at this time. We also have a cousin of Mark's whose daughter had major throat surgery last week at Primary's. And my running buddy Andrea whose husband George is struggling with Lou Gerhig's disease. We want you to know how much we care. Our thoughts and prayers are always with you.

Thursday, October 30, 2008

Beileve It Or Not, I'm 11 months old Today!!

" It is a rare occasion you catch me asleep not in my mom's arms!"
Think I'm spoiled?

" It was that silly swing that put me to sleep!"


" Big Brother Braiden was begging to put me in this
costume today! Mom says she can't decide between
this mouse or a little brown bear for Halloween
tomorrow. Personally, I just want it off. Please!"





Happy 11 months little Miracle Mason. We love you more than words can express!
Hugs and Kisses, Mom, Dad, Kaitlin, Preston, Braiden, & Ammon







Monday, October 27, 2008

Pictures for "Busy" post

Mason eating an apple.
He is doing pretty good with food now!

And here are the pictures from
CRAZY HAIR DAY:
Kaitlin

Preston

(and look how good Mason is sitting up
in the background. Not very safe on the bar
I know, but hey he is sitting up!)

Braiden



And then they got a hold of Ammon w/ the
color hairspray after school too!

Ammon





Friday, October 24, 2008

Busy

Life is sooo busy! And that would be why I've slacked in my blogging. So sorry to those of you who check the blog diligently wondering about our little Miracle Mason. Mason has been doing pretty well this week. Except for thinking he needs to wake up every hour at night and still not nap much (on which I recently have learned to blame his arrhythmia med, Amiodirone)! His cough is better and his lungs are not as junky, but had a fever last night. Hopefully it was just a fluke and not the beginning of the sick cycle again.





We've had lots of Dr. Appointments the last 2 weeks for both Mason and Ammon (which of course means more frequent flier miles....Is anyone keeping track for me?). One was at our pediatrician and three (well actually 4, one was a "2 for1") were up at Primary's, and of course on three different days. Good thing gas prices have come down a bit lately!



Monday the 13th was when I had Mason at our ped. Dr. Whiting with the nasty cough and possible pneumonia in the lungs which was treated with a shot of antibiotics.



Tuesday the 14th we went up to Primary's for Ammon to have follow visit with Neurology. It had been over a year. (The search for Ammon's diagnosis was put on the back burner when Mason was born. And 3 weeks ago I went to his preschool to meet with his teachers and therapists for his IEP meeting. Their biggest concern right now is how very short his attention span is....3 seconds...it affects how little he can actually get out of his therapy sessions. That is when I realized two things: 1. How fortunate Ammon is to attend his special preschool with such amazing teachers and therapists & 2. It is time to get Ammon back in with his doctors to make sure we are doing all we can during this early intervention window of time!) So, our Neurologist was very impressed with Ammon's progress, but said that Ammon still "baffles" him with being able to make any kind of diagnosis. Ammon had some blood drawn to look for certain enzyme deficiencies. I had put these tests off for 6 months, and little Ammon didn't even cry. He has a very high pain thresh hold and also kind of a delayed reaction when he gets hurt...so he was quite the champ in the lab! So for all have come back normal. One is still pending.





Then on Friday the 17th I took Mason back to Primary's for a check up with his ENT that put his ear tubes in last April. I had figured we would have a 45 minute appointment and ended up there for 8 hours. This was the "2 for 1" day. (Good thing I already know to expect the unexpected with Mason) The ENT, Dr. Park, said his ear tubes looked good and wasn't sure why he'd been having all the ear infections that weren't draining ( of course they look fine after going all the way up there right?!). But he did not like the way his lungs and cough sounded. And I actually thought he was sounding better since Monday. He said he heard quite a bit of weasing. Which is not good! He then sent us for a chest x-ray and got us an appointment that day with a Pulmonolgist. I was definitely glad after all, because the Pulmonoligist saw some Pneumonia(probably viral), a bit of fluid, some very constricted airways, and even a slight collapse on the lower part of his left lung. So he sent us home with 2 inhaler meds to do twice a day. (Why not add more to our daily routine? We like busy, right? And we definitely like more expensive meds!) Mason absolutely hates these breathing treatments, but they do seem to be helping. I must say I am grateful for all the wonderful specialist we are able to see here in Utah at Primary's.


Then, this week on the 23rd, I took Mason and Ammon up to Primary's for Ammon's eye appointment. His teacher's and therapists were concerned with a possible vision problem. If you can imagine trying to ask Ammon if he could see certain pictures across the room for the eye exam, you'll imagine it was very comical. First of all even though he is talking so much better, his vocabulary his much less than other 3 year olds, so he couldn't tell them what pictures he saw. Secondly, he thought pushing the up and down buttons on the exam chair was much more entertaining! Long story short, they put dilating eye drops in to get a more accurate exam, and his vision his normal for his age. Which is good, but still no help for answers on his inability to pay attention at school or home for more than 3 seconds.


Along with all the above my other kids had UEA fall break( It's a 3 day Utah school holiday which I personally don't like, sorry, but just 3 more days the kids are looking for entertainment!) Then we've had Red Ribbon Week at school with dress up days each day. I've got great pictures from "crazy hair day" and some cute ones of Mason, but my computer won't let me down load any pictures right now. I will post some when I figure out the problem.

Also, I'm sorry to those of you who are just trying to follow Mason's progress, for talking so much about the rest of our family too, but I do it for journaling purposes. I need to start a blog for my family too, but I just haven't had time. Imagine that!

Monday, October 13, 2008

Snowing Sniffles and Coughs Again!!!

So the storm blew in a new yucky cold and cough to Mason! It was a cold snowy storm that blew in over the weekend, one of the earliest snows on record. The kids were all so excited to go play in the snow, before it melted by afternoon that is. And some how I had forgotten over the summer how much work snow clothes are! Well, Mason did not go out and join them, because he has a fever and a nasty cough again. That truly means: another weekend he and I spent out on the deck and in the big red chair in the middle of the night tangled in O2 cords! Yes O2! Poor little guy can not maintain his o2 sats when he gets this nasty cough especially at night. And of course we also earned more frequent flier miles (I wish) at the pediatrician Friday and today. His lungs are junky again so he got a shot of Rosecifin to kill any pneumonia bacteria.

On a positive note he weighed in at 14 lbs today! Which is awesome because he has had trouble putting weight on while he has been sick. ( All the medicine makes him poop too much.) Also he can sit up all by himself for a long time! And it makes him so happy. For those of you who are not "heart baby "families , most "heart babies" are delayed in their motor skills due to hospital stays and just overall less strength, so he is doing pretty good.

Keep Mason in your prayers please so he can get better once again and not end up at the Primary Children's Hotel.

Wednesday, October 1, 2008

I'm 10 Months Old Now

Look at me I am 10 months old now. Wow!


Ammon loves Mason. (But, sometimes he
doesn't quite know how to show him softly.)

Braiden & Mason are on the famous "Big Red Chair".



Teaching Mason to ride the rocking horse!


"I still like my toes better than baby food!"

Poor Mason! Kaitlin wishes he were a sister sometimes!

Mason turned 10 months on Tuesday September 30th. What a long 10 months this has been! Though, I am so grateful for all we have been through with Mason. It is amazing what motherhood does to you. Once you have this new little newborn, you instantly love him more than you can imagine, and would do anything you had to to save his life! Now, if you had asked me a year ago if I could handle what lay ahead (being that Mason was not pre-diagnosed), I may have said "oh, there is no way. My hands are already so full! He will be a happy easy baby!" (Well, the part about the easy baby I did say, cuz my last 2 were extremely colicky, and I figured Ammon's special needs were enough for me!!!) But when you are given a special baby like Mason, you just do what you have to! That is a special gift given to mothers from our dear Heavenly Father. Not that I don't have teary, frustrating, crazy, days. Cuz I do have lots of those. But am grateful for the Love of Motherhood!



Monday, September 29, 2008

HAPPY

Mason is much happier today. He seems to finally be feeling better. After a few more frequent flyer miles, with another trip do Dr. Whiting on Friday and a Rosefin shot, because his ears were still full of infection and his lungs still junky, that seemed to do the trick. He's still coughing, but it definitely sounds better. Now, no jinxing, knock on wood, let's keep him happy and healthy. The sleep thing is still an issue, but not as horrible when he's not so sick!

Ammon claims to be happy too! When Ammon throws a tantrum and won't stop we put him in our front room in the little love seat and call it the "happy chair". When he is ready to be happy he can get out. Usually (though, not always this easy) after 3-5 minutes he will come find me and say "I'm happy!" I love it. Well, yesterday we were all trying to take Sunday naps after church, and Ammon had only been napping for maybe 30 minutes when he decided he was done. Sadly, because of his newly acquired skill of jumping out of the crib, he did not stay in bed. He then came to my bedroom door, where I was in napping with Mason and had just barely dozed off, and began knocking on the door saying, "Mom I'm HAPPY!!" repeating again and again until I finally acknowledged him, At least he was happy, but my nap suffered!

Monday, September 22, 2008

Frequent Flyer Miles

If I could get frequent flyer miles for how often I go to the Pediatrician (usually for Mason, next Ammon, & occasionally our other kiddos), I could take our family on an amazing vacation!!!


Mason is sick again. He was really only feeling decent for 2 or 3 days from that last sickness and now he is miserable again w / yucky ears, runny nose, cough, junky lungs, and fever. Round 2!


Let's just say; more "all nighters" in the big red chair, and "middle of the night" walks out on the deck to help the cough, all tangled in O2 cords!!! He only needed the O2 for 3 days last time, but was needing it once again last night.


Poor little guy! These Fall colds are making me think that this means a really long Winter!!!


I greatly appreciate all your prayers and concern.


Time for a long nap w/ Miracle Mason!

Thursday, September 11, 2008

The Big Red Chair & Midnight Walks

Mason is still feeling pretty sick. He has a very sad little cry. He has lost his voice from all the coughing. And he's still rubbing his little ears in pain and not eating very well. Although, this morning he seems to be a little better, but still needing O2's , and just not his happy self. We're still sleeping in the big red chair, and walking out on the deck in the middle of the night to help his cough, tangling and tripping over the O2 cords, but hey at least its not The Hotel!

And to top it off Kaitlin has invited 16 9 &10 year old neighborhood girls over for a Jonas Brothers' Birthday Party in our Basement tomorrow night. Hmmm.... could be an interesting party. Kaitlin has planned the whole thing, cuz I've been a bit consumed w/ Mason this week. We'll see how it all turns out I guess! She is so cute though. She has warned all her friends that no one can come with colds or sick at all and she promises she'll make everyone hand sanitize and stay in the basement. (She knows how worried I am about Mason and germs, and that this is a huge exception for her birthday...having that many kids in the house w/ Mason's delicate health.)

Thanks for all your prayers on Mason's behalf. I know each day is in Heavenly Father's hands and I know he hears our prayers

Tuesday, September 9, 2008

Oh No! Sick Again!

It had been going just too good to be true..... except for the little runny nose and eye infection 3 weeks ago (which only lasted a few days).....Mason had been so healthy since our last hospital visit. Well, I guess that was only 5 weeks ago, but it was a good stretch for him!! Anyways, Mason got really sick Sunday night. He has an awful bronchitis cough and double ear infections.(What's up with the ear infections? He had tubes placed in April to conquer that problem!!) He has been pretty miserable. Poor little guy, it's just not fair. We try to be so careful and he still gets sick. Though I think I may have been the culprit this time, because last week I was sick with an awful strep throat and flu. Mom's aren't supposed to get sick!!! I thought I was so careful not to spread anything around especially to Mason. Then yesterday Mark came home from work sick too. I guess this is just life at the Strickland's!!

Mason has been working really hard to breathe with all the congestion so I've had him back on O2's. ( And I had been meaning to call home health care to come pick it up, good thing I didn't) Mason coughs so hard right now it makes him gag and throw up, it is so sad. It is so hard when he is like this, because I worry about it causing heart failure. When he gets sick its bad, and so different than my other kids. I thought I worried about my other kids when they were sick, but this is a whole new level of stress.


Hopefully the antibiotics will help him start to feel better soon. And thus maybe Mason and I can sleep in our beds again (& all through the night too, okay that's asking too much), because I've been sitting up with him down in the family room in our comfy "chair & 1/2" all night, because he coughs too hard laying down. Really it's an awesome chair, but not all night and not tangled in the oxygen cord and the pulse ox monitor cord (to check his sats because of the labored breathing). This is all just for my journaling purposes, not for sympathy. Because I know there is much worse going on out there!!!


As for his 9 month check up last week, he weighed 13 lbs 10 oz, length is 25 1/2 in, basically he's in the 3rd percentile. Small, but at least there is growth, that's what counts with a heart baby!

Mason needs my full attention right now, but please say some extra prayers for him this day. We want him better and not back at The Hotel!!!

Sunday, August 31, 2008

Back to School

Mason wants to brag a little about his sister and 3 brothers because he loves them so much. Oh how he smiles and giggles when they play with him. They adore and care about him more than I could have ever imagined! I'm pretty sure Mason has wondered this past week why the house has been rather quiet and where all his playmates have gone. Well, they've all gone back to school! The mornings are very crazy getting everyone on their way, but then I think Mason begins to miss his buddies. At least Braiden is still home all morning, he is in PM kindergarten, and helps a lot with Mason. Here are some cute pictures:




Kaitlin, 1st day of 4th grade &
Preston, 1st day of 2nd grade

Braiden, 1st day of Kindergarten


Ammon, 1st day back to preschool, waiting for his bus.




Mason turned 9 months old yesterday. So hard to believe. 1 more month we are so blessed to have him be part of our family. As for an update; he continues to nurse for all his feeds and won't have anything to do with a bottle. I've tried to give him a sippy cup a few times and he just bites on it with his 2 new little chompers! As for the baby cereal thing, I try everyday , and sometimes he does okay, but most of it he just spits out. We'll just keep trying. He'll get it when he's ready. Although, he could use the extra calories. He is still such a little guy!! He rolls really well from tummy to back, and with a little help from back to tummy. He sits with a assistance. And also plays so good with the toys on his swing and exersaucer. Mostly he'd just rather be held still. He's quite spoiled!!



Mason is thinking, "Don't you get it Mom, this baby cereal stuff is yucky!"




Friday, August 29, 2008

Summertime Survival

Sammi, Ammon, & Braiden going "Bye, Bye"-
(Ammon's all day long request!)


Sammi, Ammon, Kaitlin, Braiden, & Preston

Wow! The summer sure flew by! It was fun, but definitely crazy. Mason had his second surgery and another hospital stay because of a long nasty fever. Ammon went to preschool part time for 5 weeks. Kaitlin , Preston, & Braiden took a week trip to California to stay with their Aunt Tiffany & Uncle Preston where they went to Surf Camp for a week. The rest of the summer we were all home together. How did we all survive, (especially with the needs of Mason to recover well from Surgery)? The answer to that is : SAMMI, my wonderful mother's helper, errand runner, and nanny. I seriously do not know how I would have done it all with out her!!!

My kids have really become attached and we are all sad to lose her. She will still just be across the street (where she lives with her family), but needs to go back to school and continue to work in the nursing field. She is trying to get into nursing school. Which was an extra bonus, having her CNA ,I felt comfortable enough leaving Mason with her when I made quick trips to the grocery store. Sammi would help the kids do their chores and reading everyday and then take them to do something every afternoon. This way Mason and I had a quiet house for a couple hours to nap. They did lots of swimming at the AF pool, took trips to the mall, dollar movies, $2 Tuesdays at Thanksgiving Point, playing in the stream at Grandma's & up the canyon, a day at the zoo (thanks to the Primary Children's family pass), Seven Peaks day, and much more. Sammi was so fun for the kids and very creative on my frugal budget.



She would take turns with me when either Mason or Ammon (or both at the same time!) were crying and wanted Mom. She jumped right in like my "tag team" and helped me smooth things out when times were crazy(well, I guess that would be everyday at our house). Ammon now wakes up in the morning asking for Sammi. Which says a lot in itself. She is amazingly patient with him!! All the kids love her! THANKS SAMMI!!!! We hope we can have you back next summer.

Mason is doing well, but we'd all be a little better if he'd sleep more than 1 or 2 hour increments at night (or day for that matter, he doesn't nap well either). He sends his love out to all his heart buddies and his loyal supporters.

Friday, August 22, 2008

Life's Lessons

First of all, an update on Mason; He is doing pretty good. He has caught a runny nose and an eye infection that has been going around the family. But, hopefully he can kick it and it won't turn into anything else. I took he and Ammon to the Dr. today to get eye medicine and to make sure nothing else was going on. Thankfully, no strep ( my boys are all very prone to strep, except not Mason yet thank goodness) because it has been going around our extended family. Also, their lungs were clear, so that is great. The other good news is that Mason weighed in at 13lbs 2 oz. Good Job Mason!!


You would all have loved it if I had video taped this trip to the Dr.! Ammon had one nurse just chasing him around the office when it was Mason's turn to be seen by Dr. Knorr (who is also a great Pediatrician, Dr. Whiting's partner, and has been an amazing help through all of our traumas with Mason). Then when it was his turn, 2 nurses had to assist me with Mason who was crying, and Ammon who wouldn't sit still long enough for Dr. Knorr to check him. Then when we were done,to top it off, our Dr. helped me out to my car, fearing Ammon was going to run out in the parking lot without me. Which he would have. Never, have I had such experiences with any 2 of my other kiddos!


So on with my title, Life's Lessons. The other day, after talking with the mom of a girl that I taught fourth grade to (almost 14 years ago and she is now married and teaching 5th grade. Okay, so that dates me! I'm getting old! But it is her first year teaching, and I taught her my first year.) I realized how so many of my experiences in life have prepared me for the challenges I face right now. The year I taught 4th grade I took over for a teacher in November (I was graduating from BYU the next month) that was moving, and I had a very tough group of 30 kids. My plate was very full! All the teachers felt sorry for me, and even this mom (whom I talked) said how unfair the load of challenging kids I had been given. At least 4 of the boys were ADHD, one was very severe. Let's just say, there were a lot of behavior problems in the whole class when I took over. Needless to say my patience and teaching abilities were definitely put to the test. But I did learn how each child learns and responds in his own individual way.


Now, I am not saying my own kids have ADHD, but they sure have an abundant amount of energy, especially Ammon. (If we could bottle up his energy and sell it we would be millionares.) And they are also so individual in how they learn and behave. So now my patience and mothering abilities are still being tested every day. I try my best to tailor my approach with how I deal with each of them to match their personalities. Parenting is tough, but most days I think I've learned to cope better than that "4th grade" year !!


The next year I taught kindergarten at a different school. I had kids from all different cultures and socioeconomic backgrounds. (My "life lessons" from my mission in Guatemala, before graduating, prepared me with spanish and patience in communication for this class at least!) Besides more lessons on the individuality of each child, I had 2 kindergartners who prepared me with more specific experiences for challenges I have today. One was a little autistic boy who I grew to love. I enjoyed watching the little successes he made that year in my class. He had the same kind of energy as my Ammon. The other was a little girl who came down with hepatitis, causing kidney failure. She spent a lot of time up at Primary Children's. I remember visiting her up there and wondering how her mom was coping with everything and 2 other children. (Never in my wildest dreams did I think I would some day spend so much time up at Primary's with my own Children. ) I think the most important thing I learned that year was how crucial it is to show love to my kiddos, especially those who feel they are different. I only taught school those two years, but am grateful for all that those 2 years prepared me for!


Since I've mentioned Ammon a lot in this post I thought I should explain a little bit about my little 3 year I love so much. Most of our friends and family know his history and all we've been through with him, but our new heart friends may not know as much. He has never been diagnosed with a specific title at this point except for severe developmental delay. We have met with doctors in neurology and genetics at Primary's since he was 11 months old. He has had MRI's and numerous blood tests, and 2 years of early intervention therapy, but no exact diagnosis. What I do know though, is that he has made amazing progress. He is still behind, more so mentally than with his motor skills now, but continues to progress. He is about at a 24 month old skill level and he is 3 1/2. He is running with energy from sun up to sun down ,gets into everything possible, and then usually destroys things out of curiosity.


He attends an autistic preschool through our school district, even though he has not been diagnosed autistic & does not have all the typical characteristics, their program is a great fit for him. He has learned so much since he began. I could not ask for anything better for him right now. We feel blessed he was accepted to their preschool unit. It has been a true lifesaver with how high maintenance Miracle Mason has been for us. He requires so much time and attention.


Last week I said to myself, without Ammon's little stunts each day to keep my life comical, I would have too much time to worry (more than I all ready do) about little Mason. This thought came to me when I got up early to work out (which helps me remain sane) in our "basement gym" and my eyes were too irritated from allergies to put my contacts in, so I pulled out my glasses. And to my surprise Ammon had gotten to them. They were so bent they wouldn't even stay on my face. So I figured I'd just listen to my ipod since I wouldn't be able to see the t.v. . And what do you know, Ammon had bit off one of the ear pieces on the head phones. I just had to laugh!!


I must say because of the special needs of our youngest two, our other 3 kids have become very sensitive to others who may be different. Which is truly wonderful! I am grateful for each one of my kids and the joy they bring me each day. I am still learning how to be a good mother, and am grateful to know I have forever with my kids to keep learning and improving.