Friday, December 31, 2010

Lessons

Yesterday was a really rough day.  I had many moments of being overwhelmed with sadness and tears.  Our sweet Adam started showing signs of being agitated/in pain in the afternoon, and continued into the night.  It was so hard to see him like that.  No matter what we tried, we could not soothe him for more than a few minutes.  He wasn't eating well, and was not getting any rest.  Around 1am I called our hospice nurse for advice on what to do.  She was awesome, and told me to give him some of the emergency pain medication they had stocked us with.  It was hard for us to give our little baby morphine, but we knew it was the best thing for him.  Since having the medication, he has been able to sleep, and also has had two great feedings.  Our nurse explained that with his Trisomy, his brain can short circuit and have trouble regulating his body.  The medication took the edge off enough that he was able to get back on track.  This is the first time we've experienced an episode like this.  I'm not sure if that means he is moving further along in his dying process, or if it is just something that he'll experience every now and then. 

Adam is teaching us about acceptance, and about letting go.  There is absolutely nothing we can do to change his condition or the prognosis.  It is out of our hands.  That is a tough pill to swallow.  Medicine has come so far, but there are still things that cannot be cured or fixed.  Every parents develops dreams for their unborn children - things you hope for them, want for them.  We create a vision of what life will be like once the baby arrives.  It is hard to accept that all the dreams I had for my twin boys will not happen.  There won't be bunk beds in their room, I won't be watching them play in the backyard together.  Everything has changed.  It's hard to let go of all that, and to accept our new reality.  It helps to remember that God has a plan.  He does not make mistakes.  We have to trust that, and surrender to what he has in store for us. 

On a lighter note, Luke's first well check went great.  His weight at discharge was 5 lbs. 14 oz.  Now he's up to 6 lbs. 2 oz.  The doctor was really happy with that, and said his skin color looks great, his umbilical cord is healing well, and so is his circumcision.  He's an alert, calm, happy, healthy baby!  We are so thankful for that! 

One of my friends sent me a quote that I love and wanted to share (by Victor Hugo):

"Have the courage for the greatest sorrows of life and patience for the small ones,
and when you have laboriously accomplished your daily tasks, try to sleep in peace.
God is awake."
 
 

Wednesday, December 29, 2010

Adam is home!

Today was a good day.  I have been looking forward to walking into our house for the first time with our two precious babies, and that dream came true today!  The discharge from the NICU went really well.  Our dealings with the NICU weren't the best at first (we had a couple of nurses who were not friendly/helpful at all..), but sure ended on a super note.  I am amazed at the kindness of strangers, friends, and family during times like this.  Adam's nurse for the past few days was just awesome.  She was really advocating for us to be able to take Adam home.  Loved her.  And another nurse arranged for us to have a photo shoot this morning with Luke and Adam (and us).  It was through the " " organization.  Photographers around " " donate their time/talents to give families professional pictures of their little ones who are dying.  Here is the website:

Our photographer was fantastic, and so respectful.  I can't wait to see the pictures!!  We will absolutely treasure them.  The only thing I'm sad about is the fact that Nolan couldn't be with us.  He is out of town with his dad, and couldn't be back for the session.   

Adam has done well today at home.  He's on oxygen, but is feeding through his special bottle.....so no feeding tubes or anything, which we're thrilled about.  He's pretty low key.....fusses if his diaper needs to be changed, and if he's hungry. 

We're getting the boys baptized Saturday.  We really wanted them to be baptized together....I would have liked to have a big celebration, but there is just no time and it's more important to us to do the baptism for both boys.  So it'll be a no frills baptism! 

Please continue to pray for all of us.  This is such a difficult time and the support from family and friends means a lot to us.

Tuesday, December 28, 2010

Adam David Joseph and Luke Alexander

Adam and Luke joined the world December 21st at 8:10pm and 8:11pm via c-section!  I had gone in for a high risk doctor appointment, and they decided to send me over to labor and delivery for my c-section!  It was scary, but I made it through.  I was in a lot of pain the first few days, but now it's almost been a week and I'm starting to feel human again. 

Adam weighed 5 lbs. 7 oz. and was 18.5" long... and Luke weighed 6 lbs. 9 oz. and was 19.5" long.  They look a lot alike!  Both of them have reddish hair, which is funny.  I thought for sure they'd have Mark's dark hair. 

Luke it doing great - we came home with him today for the first time.  He's a really good baby - as long as he's fed and is being cuddled, he's happy!  :-)  He even does well at night, sleeping 3 or more hours at a time, waking for his feedings.  Once he's fed he settles down fairly quickly and goes back to sleep.  We can't complain!

Adam has some challenges that came to light when he was born.  He has been diagnosed with Trisomy 13.  Sadly, this trisomy is fatal.  Most babies who have this are miscarried or are stillborn.  If they do survive birth, 90% die before their 1st birthday.....most only living a few days or weeks.  We are of course devastated.  We have decided to get Adam home ASAP so we can enjoy him.  He gets to come home Wednesday morning!  We have hospice services that we can access as needed, which will be a great support.  We love Adam so much, and having him home with us is priceless. 

So we continue to march on.  Finding out Adam's diagnosis (on Christmas day) was probably the worst moment of my life.  But Adam was trusted in our care for a reason, he is in our lives for a reason.  For that we are thankful and we look forward to creating meaningful memories with him.  Please keep us all in your prayers.     

Friday, December 17, 2010

Good boys

Well the boys passed their NST today :-)  I'm so happy we can continue with the pregnancy....unless I go into labor on my own, I'll at least make it to 36 weeks.  Yay!!!!  I really can't believe I've made it this far.  There have been so many things that made us think we'd have to deliver early - but now here we are, getting very close to full term!  We feel very lucky and appreciate all the support from our family and friends.  It would be so hard to deliver a tiny baby that needed a long stay in NICU.  We're keeping our fingers crossed that the boys will be able to come home with us when I'm released from the hospital. 

Thursday, December 16, 2010

Our first Labor and Delivery trip!

Mark and I ended up in Labor and Delivery last night.  I was having a lot of contractions and stomach pain.  I was feeling nauseous, and also it didn't seem like the babies were moving like they normally do.  So we made the one hour trek to the hospital, and sure enough I was having lots of contractions.  They monitored me for about 3 hours.  The babies were looking great (which was my big concern), and the contractions weren't "productive", so they sent us home.  My doctor is out of town, so I was glad I didn't have to be delivered by some random doctor!  I specifically picked my doctor because of his good reputation, so it would be a huge disappointment to end up with a surgeon I've never met.  I'm glad we went to the hospital because I know I would have been freaking out all night, wondering if the babies were okay.  I've been thinking that I would get the news of delivery day at one of my Tuesday/Friday appointments.  This was eye opening to realize that at any time I could go into labor.....so you just never know when the big day will be!!

Tuesday, December 14, 2010

Still Cooking!

I am thrilled to say that I am still pregnant!  I went to the high risk doctor today, and the boys are stable.  They didn't do a growth scan (those are done every 3 weeks), but they did pass the BPP and NST.  The doctor said that the blood flow through Adam's cord is pretty much unchanged from last week....a tiny bit better even.  They are both practice breathing like champs, movements were okay, and heart rates were good.  Whew!  I was really getting scared about having to deliver this week.  They would have needed NICU time for sure, and I'd love to be able to avoid that.  We continue to take things appointment to appointment.  Next test is Friday! 

As a side note, pregnancy swelling has hit big time!!!  I had to stop wearing my wedding rings last week - one day they were fine, the next day too tight.  It's been downhill from there.  If I stand for more than 5 minutes my ankles/feet get HUGE!  I feel like my extremities have all turned into sausages, LOL!  I'm like a bloated blimp.  It's a nightmare!  Stretch pants and slip on crocs are my friends....

Saturday, December 11, 2010

The end is near!

I had another NST/OB appointment Friday.  The NST went well, which was good news.  However, my doctor said that he will not be surprised if we deliver next week!!!!  I'll be 35 weeks.  He said this based on the report from Tuesday, that showed Adam is not growing like he should.  I was really hoping to get to 36 weeks, because it's safer with lung development.  But 35 weeks for twins is pretty good too.  Apparently the BPP and NST that we'll do Tuesday will show whether the boys can stay in a bit longer, or if it's time.  I'm really nervous!!  We're praying for a safe delivery and healthy boys - whenever they decide to come :-)

Tuesday, December 7, 2010

Why I'm thrilled to be having two more little boys

I have to share the sweetest thing my Nolan gave me today.  It is such a blessing to have little boys :-) 

"10 Reasons For a Mom"

1.  They're kind.
2.  They are super cool.
3.  They always care for you.
4.  They love their kids a lot.
5.  They give up so much for their kids.
6.  I'm lucky to have one.
7.  They are strong.
8.  They have faith.
9.  They're brave.
10.  They are really sweet.

Nolan is big on these random acts of sweetness - I will treasure his list forever!!!  And I guess I should keep it for when he becomes a teen and thinks I'm the worst person in the world ;-)

34 week appointment

What a day!  We had an appointment with our high-risk specialist - a growth ultrasound, NST, and a meeting with a speech pathologist.  I thought the appointment would last most of the morning.....but we left at 8:30am and didn't get home until 3:30pm!  UGH, a looooong day. 

Luke is now up to 5 lbs. 11 oz., and Adam is 4 lbs. 6 oz.  So they've definitely grown in the last three weeks!  Their amniotic fluid levels are good, and placenta function is good.  Also they passed the NST without any issues.  All good news. 

Adam is showing some growth restriction - his abdomen measured below the 10th percentile for size.  Apparently the abdomen is the first part of the body to slow down when a baby isn't growing well.  They are unsure about why exactly this has happened - it could be from being a twin (Luke could be taking more of the nutrients), or it could be from the single-umbilical artery.  Also, Adam's brain ventricles are enlarging again.  Anything over 10 mm is considered larger than normal.  His ventricles originally measured around 12 mm.  Then they went down to 5 mm.  Today they were 9.5 mm.  So they are just under the normal threshold.  The doctor wasn't overly concerned, just something that we'll have to keep an eye on after he is born.  We'll have to make sure he's meeting all of his developmental milestones.  Adam had his face buried once again, so no more insight into his cleft/tongue situation.

The doctor instructed me to eat, rest, eat some more, and rest some more!  He explained that with twins, the goal is to at least get to 34 weeks (which we've met - yay!).  From here on out, we'll just take it step by step.  He said the best measure of how the twins are doing is the NST....followed by the amniotic fluid level checks/movement checks via ultrasound....placenta function/umbilical cord function.....and then weight gain of the boys.  So since all their "vitals" looked good, they'll keep them in.  If any of their vitals change, they'll deliver.  If we make it to 37 weeks and Adam is still lagging behind in growth, then they'll deliver us then.  The only way I'll go past 37 weeks is if Adam catches up, and in that case we'd go to 38 weeks to deliver.  I'm getting really excited, and really nervous!  He said to be ready to deliver each time I have an appointment from here on out!!!

Say a prayer that the boys continue to thrive and stay snug in my belly for as long as possible!  :-)  

Monday, December 6, 2010

We have graduated from the cardiologist!

Today was our follow-up visit to the pediatric cardiologist.  Our first appointment with him was at 27 weeks, where he ruled out heart issues with both boys.  He wanted to follow up at 34 weeks just to be sure things still looked good.  Gestational diabetes, if not controlled well, can cause the heart to enlarge/thicken as the pregnancy progresses. The boys looked great!  Hearts were both normal size, so no adverse effects from gestational diabetes.  Adam still has an echogenic foci (bright spot) on his heart, but that can be a normal variation.  It seems like in Adam's case, it's just a normal variation.  The doctor got great views of the hearts and they were pumping away like they are supposed to!  :-)  When we deliver we'll let the cardiologist know, and he said he'd stop by just to take a quick peak at the boys, but does not anticipate any issues.  So at this point, we're all done with cardiology - yay!!!  We feel VERY blessed and lucky that they have healthy hearts.

Tomorrow we're having our 34 week growth scan.  I'm really hoping for some good growth from both boys!! 

Thursday, December 2, 2010

It's all good....

Adam and Luke were wild boys today!  They move A LOT, and when they were trying to do the NST at my doctor appointment, they kept moving and messing up the test.  So I was there for two hours :/  Oh well...at least they are doing okay.  My blood pressure is great, I'm dealing with some swelling, but it's not too out of control.  So all is well.  I'm bummed because it looks like a c-section is definitely in my future.  The chances are too great that the first baby will come out fine, and the second will flip and end in an emergency c-section.  I've had more than enough craziness during this pregnancy, and I'm going to follow the advice of my doctor on this one to avoid a drama-filled birth.  It's not my ideal vision of childbirth, but I will survive.