Wednesday, October 14, 2009

Health Concerns



Upon finding out Jack's diagnosis, the pediatrician immediately wanted some tests run.  50% of children who have Down Syndrome have heart defects, so we went to the Cardiologist that very next week.  After the Echocardiogram and ultrasound we were pleased to find out that Jack's heart was completely normal!  This was and is such a blessing!  We were so relieved.

Week 3 of Jack's little life rolled around and he ended up having surgery for duodenal atresia, which is an obstruction in the bowel.This started because Jack wasn't eating well and what he was eating was coming back up.  In the beginning, his pediatrician felt like I was over-reacting and he was just spitting up, but we continued to call and go in.  We knew something wasn't right.  Luckily, Jack threw up in her office and she told me to take him to the ER immediately.  After some testing, the docs found the obstruction.  I will never let go of my gut feeling again and I implore all families to do the same!

The physicians and staff at St. Louis Children's hospital were wonderful.  They were efficient, kind, informative and caring.  We felt we were in great hands.














Jack had his surgery on Friday, July 10th (he was just 18 days old).  He couldn't eat until Thursday, July 16th and we were able to  go home on Friday, July 17th - just in time for Micheal's Birthday on the 18th. 

Jack was such a champ during surgery and even afterward.  And once he was able to eat, he quickly jumped to 4 ounces per feeding within a week! 

We are so thankful to the staff at SLCH and to our families and friends, who supported and prayed for Jack during those weeks.  Thank you all very much!

Jack has since developed a hernia at his incision sight.  This means another surgery sometime in December of this year.  This will be an outpatient surgery and not near as serious as the other. 

Jack has also had an ear exam, which was completely normal!  He will undergo eye tests, spinal exams and thyroid testing each year starting in January.  We will be sure to keep you posted as those draw near.

Friday, October 9, 2009

Jack's First Week - Welcome to Holland

I was having a hard time naming this post.  This week was such a hard one.  I'll start with Wednesday, June 24th: 2 days after Jack was born and we headed home.  When we left the hospital to head home everything was seemingly fine. 

Jack still hadn't latched for more than a couple minutes in the hospital, but his weight was fine, so we were able to go home.  The pediatrician said that he would eventually "figure it out" (Breastfeeding) when he was hungry.  So, we didn't worry and went home.  I was so sore that moving around was quite difficult so I camped out with Jack downstairs in our house for the 1st few nights in order to avoid climbing stairs.



By Thursday, Jack was still not eating, and was looking quite yellow.  So, I called the DR. and she said to come in that he might have some Jaundice.

It was obvious to her that he was jaundiced and she sent us (my mom and I) to the Lab at Children's hospital to get his bilirubin level drawn to see how high his level was.  (Everyone’s blood contains bilirubin, which is removed by the liver. Before birth, the mother’s liver does this for the baby. Most babies develop jaundice in the first few days after birth because it takes a few days for the baby’s liver to get better at removing bilirubin).  Jack's level was quite high, so we had to get photo therapy lights delivered to our home and if he wouldn't take to breast, we were going to have to give him formula and I would have to pump.


The DR. also mentioned on that Thursday that she thought Jack was "floppy" and she asked me, "has anyone spoken to you about the way he looks?"  I couldn't believe she asked that question!  I was outraged...who asks a question like that. I, of course, said no.  He looked beautiful to me and then she went on to say that she wanted him tested for Down Syndrome. Michael was at work and my mom was with me at the appointment and I remember thinking..."what?? She's crazy...he's fine"  So, at the same time we got his bilirubin tested, they took his blood for a chromosome analysis.

Jack still wouldn't take to breast, so we had to give him formula bottles until I could rent a pump.  I rented a pump the next day and have pumped for Jack ever since and still do.  We still try daily to nurse, but he is much too used to the bottle now.(side note - he finally latched when he was 5 months old - so it can be done)



We figured out the pumping thing and fell more inlove with Jack.  We both held him so tightly those next 2 days not knowing what the results of that test would be.  We couldn't see it...he was just so beautiful and perfect (he still is, by the way!).

My parents left Saturday morning, and right after they left, we got a phone call from our then pediatrician asking us to come into the office to talk.  Our stomachs dropped.  The results weren't supposed to be in for a week...and we weren't ready for the answer.  The ride to the office was silent.  I sat in the back with Jack while Michael drove.  I was praying for strength in my head.

We got there and the doc made small talk about Jack's eating, nursing and bilirubin level (which was not going down).  And then she finally gave us the news: Jack's test was positive for Trisomy 21.  This is commonly called Down Syndrome.  This meant that Jack was born with an extra 21st chromosome..he had 3 instead of 2.  Unfortunately, having this ONE extra chromosome sets him up for all sorts of health issues: heart defects, intestinal abnormalities, sight and hearing problems, etc.  The list was long as she went through them.  Then she said a horrible thing...his life expectancy.  She said that he would live to be in his 30s.  Hearing that was the worst part of it.  We later found out that her information was wrong...life expectancies are much longer now and with the right interventions, he would live much longer.  We changed pediatricians.

Michael and I got into the car and cried.  We just cried and cried.  That entire Saturday was filled with our tears.  We held our baby boy and wept.  We wept because we didn't understand, we didn't know what to expect, we didn't know what health problems he had or would have, we didn't want to out-live him, we didn't want him to have a difficult life or be made fun of, we didn't want him to ever feel small or different.

Let me interrupt this for a moment to say that when you have a child...your immediate "MOMMA BEAR" exists.  You live to protect your child from all bad things..all things that could hurt or wound him.  But this was something we couldn't protect him from...something we couldn't change and it was so hard.  You love your child so much that you want the absolute best for them...and at that moment..in the beginning you are just sad.

The days past and as we told our families first, and friends second, and did a lot of research.

He was and is our son.  He is our heart and soul and we love him.  I can't imagine not having him in our lives.  And although it was hard to find out the way we did, I am glad it happened that way.  We had our entire pregnancy and those first 5 days of his life to just love him without any pressures or concerns or weariness or research or special appointments.  And after the initial shock of the diagnosis, we were able to have 'just Jack' and our little family.

We will be a little different from our friends who have kids and we will be a little more protective and we will do a little more studying and exercises, and there will be therapy and perhaps different sports, but we will be together and we will love and that's what matters.

I will attach a story, "Welcome to Holland"  It is from a mother who has a child with a developmental delay to express those initial emotions.  I will say that we love Holland and are glad we are here.  I am sure Italy is wonderful, but hey...Holland isn't too shabby! :)

WELCOME TO HOLLAND

by
Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome Baby Jack!!

A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for

About my 37th week, I started to feel much more pressure and I remember going to our appt that week and the doctor saying we might have a baby very soon!  I was so excited especially after our false alarm...which I won't embarrass myself by sharing.

I felt great that week..did a lot of cleaning.  Sunday, June 21st we went to Ted Drewes for some frozen custard with a couple from our child birthing class, Gilly and Andrew.  They were a week ahead of us in their pregnancy and Gilly and I were huge!  I remember ordering a "Dutchmen" concrete (chocolate custard, butterscotch, almonds and hot fudge) and eating every single bite.  Then the 4 of us went on about a 2 mile walk...well, actually the boys walked, Gilly and I waddled. :)

We got home around 9:00 and were both exhausted.

Side note: St. Louis in June is MISERABLE!! It's 100% humid and HOTTTT!  So, after our stroll, Michael and I were drenched in sweat and desperately needed a shower.

We eventually went to bed, and I remember around midnight feeling a sharp pain in my abdomen...not painful really...just alerting.  So..I drifted off to sleep and around 1:00 am..the same thing.  I thought, "I shouldn't have eaten all that ice cream" and tried to go back to sleep.  However, those sharp little pains were coming every 10 minutes and by 5:00 am they were coming every 6 minutes. I was totally calm...I woke Michael up and told him..so we kept timing the contractions and at 6:00 Am they were between 5-6 minutes apart.  So, Michael and I let our employers know that we were going to most likely have a baby!  I took a shower and calmly packed my things.  At 9:30, we decided to head to the hospital and the triage unit confirmed that we were in labor.  I was 4 cm dilated and 80% effaced, with contractions 5 min apart.  They said I could walk around to speed up the process.  So I walked, and walked and walked! I bet I walked 5 miles that day going up and down those halls in my gown.  People were laughing at me and my doctor couldn't believe how fast I was walking.  But it really helped handle the pain.  At around 2:30...I was 7 cm dilated and fully effaced, but my water hadn't broken.  My contractions were 3-4 minutes apart and getting much stronger.  Around 3:45 I allowed Dr. Parks to break my water.  Immediately afterward, the contractions intensified and the pain made the other contractions look like toe stumps in comparison. I was bouncing on a ball and I finally yelled, " I have to push!"

Then my parents arrived.  Perfect timing.  They drove all the way from Chattanooga and left at 8 am that morning and my mom said she knew that our baby was coming!

 So I got off my ball, into the bed and Michael took one leg and the nurse took the other and at 4:51pm, our beautiful son entered our world! (FYI - pushing is very very hard!!)   I am pleased to say that I did this with no medication but with A LOT of effort!  I remember being absolutely exhausted and kind of in shock when he was finally born.

Jack was crying and getting cleaned up.  He received a high apgar score and was perfectly normal.

I remember holding him..thinking..."Oh my goodness...this is our son!" I had looked so forward to seeing what he looked like, and he was beautiful.  He had a little hair, big blue eyes and was fair in complexion.  He was perfect.

We tried nursing immediately, but he didn't seem to be interested.  So I kept trying and lactation came in, but he wasn't latching.  This didn't alarm us because we felt like he would get it eventually. But we also didn't know that he had Down Syndrome and was hypo tonic, meaning that his muscles are quite weak and latching would be difficult for him.

We stayed in the hospital Monday and Tuesday night, and I remember Monday night, after everyone had left, holding my son in my arms and just crying and thanking God that he was finally here and healthy and just wonderful.  I was just amazed. I couldn't believe that we had been blessed with such wonder and love.  And I couldn't believe how much I loved him!!! It was crazy.  I felt like there was so much love inside of me that I was going to explode! I remember telling Jack...promising him that we would always love him...that there was nothing he could EVER do to make us love him less and that we would always, always, always be here for him!

Before you were conceived
I wanted you
Before you were born
I loved you
Before you were here an hour
I would give my life for you
This is the miracle of life.
~ Maureen Hawkins
 


Our Family had a new member, and Michael and I were pleased.  No one mentioned anything to us in the hospital about the possibility of Jack having Down Syndrome and he looked like a typical baby to us, so we went home and began our life as a family.

"Sometimes," said Pooh, "the smallest things take up the most room in your heart."



Background

Ironically, as I start this blog today...We found out that we were pregnant with our beautiful baby boy on Tuesday October 28th.  Our first OB appt. was on November 13th and we were about 6 weeks along at that time.
My pregnancy was completely normal.  Our first ultrasound we could see this tiny little pea of a baby and he already had a very strong heartbeat. Michael and I were overjoyed as we listened and were anxious to get through the 1st trimester.  My morning sickness happened at night, so Michael was on his own for dinner for quite a while.  He didn't mind this as he got away with eating tons of steaks and pork...he wasn't about to cook any veggies!

Through Christmas and New Years, my stomach grew as did our baby.  We had our 12 week ultrasound and our baby was still absolutely healthy.  We also had a "First-Look" ultrasound which measures different parts of the baby to determine if there are any abnormalities.  After the ultrasound is taken and your family history is taken they send you a sheet in the mail that explains your risk for any birth defect.  Our risk was incredibly low and based on what the sheet said, we didn't feel there was any further testing needed.  Our OB agreed and so we went on with our healthy pregnancy.




And now our little Jack at 20 weeks:


It's a boy!!!
We found out that our baby was a Boy on February 19th, 2009!!  We were both thrilled and when the above image popped up on the screen, there was no disputing it!  Michael had always said that his family only produced boys, so we weren't too surprised!  Immediately we named him Joseph Steven.  He is named after his grandfather on Michael's dad's side (Joseph).  Michael's family called his grandpa "Jack", so therefore, we call our little baby Jack!  His middle name, Steven, comes from both of our dads. So, the name was quite easy and we know that he walks in the footsteps of some amazing men.  What a legacy before him.

The weekend before we found out the sex is when I felt him move for the 1s time!  It was so amazing and magical!  Michael wasn't able to feel him for a few more weeks and toward the end, we would just watch my stomach move all around.  Jack was proving to be a kicker!  That is probably the main thing I miss about pregnancy - having him with me all the time and being able to feel his every movement...I LOVED IT!




The rest of our pregnancy went as planned.  My cravings included McDonald french fries, tomatoes, watermelon, ice cream, and very grilled hot dogs!  Towards the end, all I wanted was hot dogs!!     All in all, our pregnancy was pretty normal and enjoyable.  But I will say, those last 10 weeks, are not easy and you do fill like a blimp!
This is a picture from my baby shower at 33 weeks!  They were all trying to guess how big my tummy was with a piece of ribbon...they all over-estimated!!! SAD!


And here I am at the Race for the Cure...37 weeks preggo!
My friend and Co-worker, Laura, accompanied me.  And as you can see, I had started to "drop" at this point.  My appt on the 37th week revealed that I was starting to dialate and efface!  We didn't think Jack was going to wait for July 6 (the due date) to come!

We've started a Blog

I've been inspired by other moms who have started blogs for their families and especially their children who have Down Syndrome. So, I have decided that this will be a great way to share stories, pictures and updates about our little family. You can also post comments or questions. I am still learning about "blogging" but hopefully overtime this will become a great way for us to communicate since we are all scattered.

Let me know if you have ideas
Brandi