Dr. Appointment update

Waiting for Dr. Nelson

On Wednesday, Mason had his 1 month check up with Dr. Nelson. I was actually looking forward to this appointment because I feel reassured know he has been checked over by the Dr. We started off with the scales. Mason is now 8lbs 12oz!! He is gaining weight wonderfully~! Next they did his oxygen saturation (because of his heart condition they do this at every appt). They like it to be in the high 90s... Mason was bouncing between 85 & 90. We finally got a reading of 92 and used that. Next we saw Dr. Nelson. She checked him over thoroughly ( LOVE that she doesn't rush appointments!) and I pointed out all the concerns I had.. and she told me all was normal for his heart condition. She then charted Mason on the graphs ( we use down syndrome charts for Mason but she also prints me a copy of a "typical" child chart to compare) He is (on the DS chart) 43% for height and 57% for weight, (on "TC" he is 17% and 24%) Then she did his physical analysis ... He has great muscle tone! He is a little weaker in the neck but I blame it on the big chunky cheeks!

So all together he is doing great, still no signs of heart failure!!!!!!!!!! We continue to pray for God to watch over Mason and keep him as healthy as possible till his heart surgery.

Leaving the Drs office...

Gaining...

Just a quick update:

We were told Mason would have a difficult time gaining weight due to his heart defect, and would nt be able to breastfeed because he would have low muscle tone due to the Down syndrome. Well as it seems....Mason loves proving people wrong! Mason is now 8lbs 7.7oz (almost 2lbs up from his birth weight in 4 wks!!) and is nursing like a champ...no bottles at all! He is "thriving" (Dr. terms) and doing great.

We see Dr. Nelson (pediatrician) tomorrow for a check up. Praying all continues to go as well as it has!
GOD IS GOOD!

Share The Prayers...

Jonah:


I started this blog to share our experience with Down syndrome , heart defect, and cystic hygroma. When I first started the blog I didnt think or care if anyone read it. It was just a way to express how I was feeling. But very quickly I realized what was going on with Mason was touching so many lives. So I wanted to use all this for the good of not just Mason but other babies in the same situation.

I was emailed by Dan & Joyce. There story really touched me...because they seem to be going through the exact same things we are with Mason. Both boys were born only days apart , both with DS & heart defects. Here is Jonahs story:

In all started on Dec 21st, we got a 3D/4D ultrasound to find out the gender of the baby. The technician noticed a slight issue with his heart, so we ended up getting it checked out more detail in January. Well 3 ultrasounds later (an OBGYN, high-risk OB and pediatric cardiologist) we were given the news that he had two holes in his heart and a single valve that needs to be split into two valves. We also learned that this heart condition was a hard marker for down syndrome. That was the furthest from our concern, as we were worried about the heart. It made me so mad when the first thing the high-risk OB (can't remember what they are medically called) stated our first option was to "terminate the pregnancy". I found it appalling knowing that 9 out of 10 babies with the possibility of down syndrome are aborted, and I can see why when docs try to scare parents with this type of news of how bleak "their" future will be "if" they continue with the pregnancy.

So with our strong Christian and pro-life believes that was never an option. So we continued on, and Jonah was delivered on April 26th. He came out a bit bluish and we could tell immediately that he had down syndrome. We would have been shocked had he 'not' had DS. God actually showed my wife in a dream that this baby had down syndrome even before we knew of the heart condition. The most shocking part of his delivery for us was that he was born with an extra digit on his right hand under his thumb. I don't think it is usable so at some point it will probably be removed. It's not a big deal to us, it was just something we weren't aware of.....

Immediately he was wisked away for tests, so we maybe saw him for 15 minutes after delivery then we got him for another 30 or so before he was admitted into the NICU. It was very hard for us to leave the hospital after Joyce was discharged on the 28th. He was very weak and needed to be under a heater and was given oxygen through his nose and was very lethargic when taking his bottles, usually falling asleep after only taking a very small amount.

He began to get stronger and within a few days he was off the oxygen and within a week or two out of being under the lights. His last struggle was finishing the bottles for 3 straight days.....he came close after 2 weeks and got his nose feeding tube removed but he began to struggle again. So to close as we get ready to take him home tomorrow his stay will end up being 27 days. He has three brothers at home waiting for him, the youngest being 19 months who has no clue what is about to happen. The others are 15 and 10.


So I ask for you to pray for Jonah, as you have for Mason. It seems both boys will be having surgery about the same time. So we ask God to watch over our boys and to heal their tiny hearts and help us , as parents, to just enjoy every minute we have with them.
.
Here is Mason (both boy are wearing the same outfit)

I just have to say....I was worried how "cute" mason would be because of him having down syndrome. We get stopped all the time with Colby (look at that blonde hair & blue eyes...) and was worried we wouldnt get the same reaction with Mason. Well Im not sure what I was worried about. He is surely a cutie pie.

Hi Ho, Hi Ho

Its off to Children's Mercy Hospital we go...

Today Cory, Mason , and I went to CMH for a meeting with the genetic counselor. We TOTALLY didnt know what to expect but we jumped in the car and off we went. We arrived right on time and got checked in (after all the nurses finished fawning over Mason) Our nurse called us back to check Mason's weight & height. He is now 7lbs 15oz and 20inches long! Then Mason decided he was ready to eat... so mommy took over so Mason could get his MILKY Time on.

Well sure as day, the counselor walks in and looks around the room (looking for mason) and kinda looks puzzeld, until she looks at me with a blanket thrown over my shoulder, then said " Oh there he is, all I seen was tiny feet sticking out"! So Mason continued hoggin out on milk while we chatted with the counselor. She was super informative and really easy to talk to. We actually (by we I mean Cory) had lots in common. We did find out some great news while we were there. Mason's form of DS is NOT HEREDITARY! It was just a "fluke" ( although I dont think it was a fluke...it was Gods Plan for Mason). Also they think Mason has a mild form of Down syndrome!!!!! So again, GOD was good to us. We are so thankful our little guy is doing so so so well!

Now if we can just get past open heart surgery...mommy will be much happier!

1st Cardiologist appointment

This morning was Mason's first official cardiologist appointment. I didn't know what exactly would be done or what they would say...I just was told to be there at 11:30am. So without knowing what to really expect , my nerves got the best of me.

Will they do an echo?
Will they find something wrong and admit him to the hospital?
Will they say he is in heart failure?????

( My mind runs every scenario possible)

We get to the Heart Center at bit before our appointment (yay for getting a newborn fed, dressed, and ready to go on time!) We go to the receptionists desk to check in, but as were checking in i notice something. There is no one UNDER the age of 90 in the office, and here I come waltzing in with a 3 wk old baby. Oh the looks I got. After we checked in, we were called back and Mason got his vitals taken.
Here are the stats:

Oxygen saturation : 94% ( they like it to be above 90..so YAY!)
Heart rate: 143 (good!)
Weight: 7lbs 15.5oz ....yep he has gained over a pound in 2 wks! (actually he gained 5 oz in 2 days!)
Height : 21.5 inches long (growing like a weed)


Soon after his vitals, Dr Parthiban came in. She is also the cardiologist that saw Mason in the NICU ( she also said he would be in heart failure by 2-3 DAYS OLD....WRONG!) She checked over Mason & his charts. Her evaluation of him..... He is doing GREAT! NO HEART FAILURE ! He is gaining weight, lungs are clear, no labored breathing, and no need for any medication right now! She was pretty amazed. We talked about his surgery, She said it will be around September. Other than that there is nothing to report. We go back for another check up in 3 wks.

It just seems like our prayers are still working on our tiny guy. He is doing great and is truly just a joy to be around.

Keep fighting my tiny guy, Mommy loves you.

More alike than different.

More alike than different.

We have had several comments on how Mason looks like a "regular baby". I know that I was slightly worried before he was born, what he would look like.
Would others think he was cute?
Would he be picture worthy?
Would others oooh & ahhh over him
Would he look so different from "other babies"?

I remember stumbling across a phrase from a Down syndrome website....More Alike than Different. I think God needed me to see that. That phrase has stuck with me ever since. While pregnant with Mason , I was worried about how "Different" he would be. It was a fear of the unknown.

But now we know....We know that Mason is more like other babies , than different. Actually Im starting to think he is BETTER than other babies. Mason is such a sweet , cuddly baby. He loves for people to talk to him and almost never cries. He is just the BEST. I truly feel blessed to have him in our lives.

Guidelines...

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome). An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them. Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults. It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by." Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same." Here are some basic guidelines for using People First Language: Put people first, not their disability A "person with a disability", not a "disabled person" A "child with autism", not an "autistic child" Use emotionally neutral expressions A person "with" cerebral palsy, not "afflicted with" cerebral palsy An individual who had a stroke, not a stroke "victim" A person "has" Down syndrome, not "suffers from" Down syndrome Emphasize abilities, not limitations A person "uses a wheelchair", not "wheelchair-bound" A child "receives special education services", not "in special ed" Adopt preferred language A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded" "Typically developing" or "typical" is preferred over "normal" "Accessible" parking space or hotel room is preferred over "handicapped"

from the national down syndrome congress

Looking back

Yesterday was kinda of an emotional day (blame it on the hormones). For some reason all I could keep thinking about was this:

Drs thought we should should abort Mason.(Thankfully not our Drs!)

That Mason was given a 3% chance of survival.

Looking back to January 5th, when our whole life changed, at that point in time I honestly thought Mason would not survive. That the odds were stacked against him. And honestly they were. I remember crying in the shower every night, praying that God would watch over Mason and let him stay here with us. I remember every Dr appt and the feeling of holding our breath, just trying to keep him healthy until delivery. I remember the tears I cried when we started picking out funeral music. There seemed to be so much sadness back then. Just gray & cloudy thoughts. Then God started doing miracles in Mason. Slowly Mason got better. Prayers were being answered.

It took a long hard journey to get Mason here..but he is here! He is doing better than any Dr expected him to. All of that is because of Gods wonderful power. He has great plans for Mason.

So to those who thought Mason shouldnt/couldnt be here ... Look at Gods miracle :

LOVE

Photo by GM Photography

This photo sums up all the feelings I have held in waiting to get this precious child into the world.

Do they know?

Since Mason is finally home and our little family is getting into the swing of thing...some new concerns have arose.

Thankfully none of the concerns are about Mason's health...they are more about how the world perceives this little boy. In our "circle" ( Family & Friends) Mason is treated just like a regular baby.....well almost.... he is a little more loved then a regular baby. But now I find myself wondering how the world will treat my little boy. Will they accept him, love him, or will they mistreat him?

None of these questions are ones I can answer. When were out and about with Mason, I wonder if people can tell he has down syndrome. I pray they don't feel sorry for us, were not sorry he has DS. When I look at Mason, all I see is answered prayers. I took a long 5month fight to get this tiny boy here....and there is nothing to be sorry for. He is perfect in Gods eyes...and ours.

The other night was the first time I had to tell a stranger that Mason has down syndrome. I didn't think it would hurt my heart as much as it did. Saying that he has DS didn't hurt me...it was the sad reaction the stranger returned that broke my heart. Her intentions were good but I could see the pity in her eyes. That look of sadness . Then the comments on how "sweet and kind" children with DS are. Its like they are trying to convince themselves that its a good thing.

I guess this is just something I will need to get used to. Maybe I will be able to better educate people on DS and that Mason will live a normal life and do normal thing... just at his own pace. That sadness & pity don't make it any better and that Mason is really just like any other baby...just a little bit more special.

My Reasons...

These are the reasons that today was the BEST Mother's Day I have ever had.

Over achiever...

Mason is a rock star....

He has beat MANY MANY odds so far in the short 2 weeks he has been here and continues to do so on a daily basis.

Because of his heart condition & Down Syndrome they said he would most likely need a feeding tube to eat...NOPE, not Mason.
Also they said he would have trouble gaining weight... Nope, not Mason ( they like to see at least 1/2 an oz a day gain for "normal" babies... Mason is gaining 1.25 oz a day!)
They said he would be in heart failure & need medication...Nope, not Mason.

As my dad says..."He is a fighter, proving the doubters wrong". He is showing that God has blessed this tiny baby in more ways then we can count. And we give God the Glory!


<< This keeps running through my mind the last few days... " For this child, I have prayed"... And boy is that true.>>

I think I need this...

He is just Mason

( Sorry for the delay in updates..its been busy)
Its hard to believe our little boy is 2 wks old already. Its been a difficult 2 weeks. Having Mason whisked away to the NICU right after he was born was not the "ideal" way to start our new life together. Nothing is harder on a mothers heart than being kept away from your new baby. Yes, we knew he was in the best place he could be & was being taken care of by the BEST medical team.... but my heart broke every time I had to leave him behind. Each night we would say a prayer over him before we left, never once was I able to make it through the whole prayer without crying. My heart literally broke each time we had to leave. I prayed that God would calm my heart and help me through those 11 days. He did.

While in the NICU, Mason had several tests done on his heart. The cardiologist said he would most likely go into heart failure by 2-3 days old. The tech who did his echo cardiogram said he had never seen an AVSD as severe as Masons'. We were put on high alert to watch for the signs of heart failure....but God is still protecting Mason. Mason has showed ZERO signs of heart failure. Despite everything the DRs have predicted. Because God is Good.

Mason is still impressing all the Drs. He is gaining weight & and eating well (both things they didn't think he would do with his "problem heart".) We are aware that God has a BIG PLAN for Mason....and we will just sit back and watch in amazement of all the wonders God has in store for our sweet boy.

We have gotten several comments about how Mason doesn't "look " like he has Down Syndrome.
Yes, Mason has down syndrome.
No, we don't know the severity.(and there isn't any "tests" to check severity)

Anymore, when I look at Mason, I don't look for the signs of down syndrome, I just see Mason.

He is HOME!!!!!

;

Guess what....

MASON IS GOING HOME!!!!!!!!!!!!

We head back up to the hospital in about 2 hrs to bring him home!! We are so happy to finally bring our baby boy home!!!

Update

Life has been crazy around here since our sweet Mason made it into the world last Friday. Mason has been doing great, he isn't on any medications or machines. The only thing he is working on is finishing his bottles. As of the last feeding tonight...he has only 2 more bottle to fully finish to make it 24hrs of taking full bottles. He has to do 24 to 36 hrs straight of finished bottles to get released...so were close to going home.

This week has been the hardest & happiest week for us. Its been difficult on both Cory & I to have to leave Mason in the NICU to go home after I was released from the hospital. Add post pregnancy hormones...I was a mess. I feel like were in limbo now, between trying to spend time with Colby & trying to make it to as many feedings for Mason....momma is stressed. But we are trying to stay positive and focus on the fact that we will get through this difficult time. We also are just so very thankful that our Mason is here with us. I find my eyes welling up with tears every time I see him. Just the thought that we went from planing a memorial service to holding a miracle in our arms shows me how AWESOME our Lord is.

We pray that God calms our worried hearts and gives us peace in knowing we will get through this difficult time.

Also we praise God that Mason's heart is doing good and not showing signs of heart failure. Dr.s thought his heart would start failing within a few days after birth...well GOD is still showing us his blessings and Mason's heart is doing well (even surprising the Drs a bit). God is so good!