Appointment updates...

Today we had 2 dr appointments.

One with Dr Nelson ( pediatrician)
One with Dr Goertz ( cardiologist)

First up was Dr. Nelson. Everything checked out wonderfully! She said that Mason was hitting all the milestone he should be for a "typical" child at this age. This isnt too hard to do at 2 months...but were happy he is doing great. He is still a little peanut. Here is his stats:

weight 9lbs 12oz (45th%)
height 22 inches (23rd%)
head circumference (48th%)
oxygen saturation 89
(down syndrome chart was used for these %)

Dr Nelson gave him a clean bill of health and said to see here again in 2mo.

Next came Dr. Goertz's appointment. Pretty simple appointment this time. Just a weight check & med adjustment. He said Mason heart sounded really loud. This means he has a lot more fluid around his heart. He adjusted his meds quite a bit (Mason has gained almost 1lb since last appt ) and said that should help his heart for a few weeks will we have to adjust again. Also they are "presenting" Masons case to the surgery panel after our appointment & echo on July 18th. After this is done we will schedule surgery for a few weeks after (1st or middle part of August) Im starting to feel the anxiety of the surgery coming soon. ...Praying All goes smoothly till surgery.


Now were off for a little weekend get away with the family...trying to enjoy some family time before the stress of surgery eats us all up

Father's Day

Sarah Palin's Letter to Her Family About Trig

Sarah Palin's Letter to Her Family About Trig

To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be "Trig", because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palins look forward to birthday celebrations that go on for three, four days... you all really like cake .) I know you, I knew you'd be better off with just a short time to wait!

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing. But I gave Trig' s mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that. I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you...

I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters. The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect". You will grow and be blessed with greater understanding that will be born along with Trig.

Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did. And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family. Many people won't understand... and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make `em all shapes and sizes? Believe me ,, there is no "perfect"!)
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts... for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book ! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Love,
Trig's Creator, Your Heavenly Father

Adjusting....

I feel like im holding my breath.
Waiting for something to happen.
Double checking meds
Watching for symptoms to arise.

There is just so much to watch for :
faster breathing
nasal flaring
retraction
grunting during rest
chronic cough
fussiness
urinating less often
sweaty or clammy
taking longer to eat
taking smaller feedings
poor weight gain
sleeping more
pale or dusky color
hands & feet cold
swelling


Now all of that is a lot to watch for...but take into account..half of all those thing are normal things babies do. So I spend my days wondering if these is something wrong or if Mason is just being a typical newborn.

Im starting to feel the toll of all the responsibilities. Its starting to weigh me down. I feel like there is so much on my shoulders. I have so much worry about Mason's surgery. So much is "un known"

We were told my the cardiologist that Mason will need to have another procedure before surgery. A heart catheter. That threw us for a loop since we were unaware we would have to do that.

Im realizing that these procedures are not too far away and pretty soon we will be in the "thick of it" and then after that we will be on our way to recovery!

Praying for strength and peace for my worried heart.

Cardio appt update

Mason had a cardiology check up yesterday afternoon. We were seen by Dr. Shroder ( she was our Dr. while we were at KU Med.)

Mason's Stats:
weight- 9lbs 2oz (Gaining weight WONDERFULLY) getting closer to our 11 lb goal for surgery!
Oxygen Saturation- 93 ( great for him!)

The rest of the appointment went wonderfully. She said Mason looked great, and was responding well to his meds. Actually she moved a dose down to 2x a day from 3. ( no more 1am meds!!!!) but then I got a bit of shocking news. Mason will need a procedure done before his surgery. He will need a catheter put in the artery in his thigh , and ran up to his heart, to measure the pressure in his lungs & his heart. We didn't realize he would need this but there is concern with his lungs. We cant do surgery if his lung pressure is too high. Also we were told that surgery might be moved up a bit...so as not to cause permanent lung damage.

I feel like were just starting down the "mending Mason's heart" road...but already I dont feel strong enough to handle it. Every aspect of heart surgery is truly upsetting and hard to handle. He is just so tiny. So small and fragile. And they have all these procedure they need to do to him and it seems we had to fight so hard to get him here....only to find out our next journey has just begun.

But we pray for peace and calmness as we begin this journey. We know Mason is a fighter....and we will fight for him as well! In the end ...we will look back and see all the difficulties we have overcame.

Today we Pray.

Today we are praying for Jen and her son Joey.

Joey is having open heart surgery (like Mason will be having in 3 mo) today.

We pray that Joeys surgery goes as well as possible.
That his tiny heart is mended.


Dear Heavenly Father;

We lift up tiny Joey to you today. Please guide the Drs & staffs hands while they mend this precious child's heart. May there be no complications & a smooth recovery. Also put your hands on Joeys parents (and family) as they journey through this difficult time.

In his most precious name
Amen


Jen & I have emailed back and forth. We both had very similar pregnancies, and both had to fight to get our sons here. Joey also had a Cystic Hygroma (resolved like Masons did!), Down syndrome, and a heart defect. Jen has been so kind as to answer any questions we have had about surgery and down syndrome. It has been so helpful to us already!

So I wanted to share her story , as they go through the hardest day so far (Surgery day).

I ask you to say a prayer for Joey.

because prayer is what got these boys here!

1st surgery update

Off bypass

To those who said...

To those who said Mason would "suffer" from Down syndrome.... No "suffering" here!

Were in heart failure...

Mason in the ER

Cuddles with daddy


Hello from KU Med



We knew this would happen...but it didnt make it any easier.

On Friday Mason started to breath a bit heavier and was modeled. Since both were a slight cause for concern ...we went and saw Dr. Nelson. almost 4 hours, 7 needle sticks, and 1 chest xray... we were told to keep an eye on everything and if anything increases to call or go to ER.

Well Saturday morning brought a bit of concern....Mason wasn't any better but not really worse either. So we made an appt for 2pm to get him checked again by the NICU nurse. Well they were concerned so I called Dr. Nelsons office. But since it was the weekend, we got the nurse on call, "go to ER" was what she said. *** Being well educated on Masons heart condition, I feel like I know a lot more than the nurses and Dr.s that see him ( except the cardiologist & Dr. Nelson .. we like them!). So I called the cardiologist ( their practice is at KU Med. about 1.5 hours away from us) she said he should be seen and take him to er. So off we went.

We get to Stormont-Vail , scare the check in lady ( she asked why we were there to be seen...our reply "heart failure & respiratory distress", We get rushed right back to a room , there is 7 drs/nurses in the room and they start working on him. (VERY SCARY) The put him on oxygen ( Big no no, with his heart condition oxygen sats in the 80s-70s are normal for him) and that made his lungs fill up with fluid more and the KU cardiologist had to call & tell them NOT to give him oxygen. After a blood draw, IV, chest x ray (again) we got some news....They were transferring Mason to KU Med. So into an ambulance we went and off to Kansas City at 10pm at night. We were greeted by a pediatric team that immediately started working on Mason. He was stabilized and started on meds.

We finally got to go home yesterday late afternoon. Mason is now on 2 meds. One to pull fluid off his lungs and from around his heart. The other is to help pump his heart stronger. So now we watch him closely and will adjust his meds accordingly.

He will get worse before his surgery
Surgery is still set for September.

Prayers are needed for Masons health. That his heart does the best it can till surgery is needed. and that God gives Mason's Dr.s the guidance needed to treat Mason.


Getting the news we could go home!


Sleeping with mommy