Home Sweet Home

Both babies are now home!  Praise God!  My due date wasn't until August 9th so we're feeling so blessed that they're both home already.  Aryanna came home on July 15th after 52 days in the NICU and Anthony came home on July 18th after 55 days in the NICU.  Aryanna's only follow-up appointments besides the pediatrician are the ophthalmologist and our pediatrician would like both of them to see a pulmonologist (lung doctor) since they came home on oxygen.  We took them to the ophthalmologist today and they are both out of the woods for ROP (Retinopathy of Prematurity - a condition that many preemies develop where the blood vessels in their eyes develop irregularly) so we don't have to follow up with that anymore!  Yay!  Anthony will follow up with the cardiologist in a few weeks to check on his PDA (the condition that caused his heart murmur) but when they checked it before he left the hospital it was much smaller than it had been.  He couldn't take meds for it because of his brain bleed so we're so grateful that it's closing on its own and he hasn't needed surgery to close it!  He will also be seen in a few weeks at Mercy on an outpatient basis for a follow-up head ultrasound to check on the swelling in his brain.  I'm no doctor, but his soft spot sure feels better than it did when they were having to do all of the spinal taps.  We're daily amazed at the ways God has worked in the lives of our sweet babies!  Our last week in the hospital we were telling nurses that we were going home that week and several of them asked, "Both of them?"  I think that they were all shocked that Anthony got to go home so soon after Aryanna.  They're both such miracles!

Aryanna & Anthony on their respective going home days:

Thanks for my cute headband, Shawn!

Our little monkey

 NICU Graduates!!!

 Aren't they so tiny in their car seats?!

Life at home has been WONDERFUL and CRAZY!  We love being able to snuggle them and it's so nice not having to leave them at the hospital at night.  However, life with two infants is extremely busy.  It's rare we even find a moment to sit down.  My mom came down on Wednesday night and stayed with us until Sunday morning and it was such a blessing to have an extra set of hands while we figured out a routine.  I think she probably needed a vacation (or just a couple of days to catch up on sleep) after spending a few days with us.  Not only are we feeding, changing, bathing them, etc but they have so many appointments!  Because they're on oxygen we've had home health here delivering/setting up oxygen 3 times already.  We also have a visiting nurse that comes twice a week and occupational therapy that comes once a week.  Last week we had to go to the pediatrician twice (once for Aryanna, once for Anthony) for their initial appointments with her and we'll see her again this week for their 2 month appointment/immunizations (they're going to be 2 months old on Wednesday - how can that be?!)  Then today, we had their appointment with the ophthalmologist.  Phew!  It's busy, but we're grateful we have so many resources available to us to help our babies grow and develop.

Bath time:

Just chillin' in my bath tub

Check out my faux hawk

Warming up with mommy after my bath

You would not believe the equipment these kiddos have either.  They each have a large oxygen tank with a 25' cannula for around the apartment.

When we have to go out we switch to portable oxygen tanks that last about 5 hours each.  They're both also hooked up to apnea monitors around the clock.  Those alarm if they quit breathing for more than 20 seconds or if their heart rate gets too high or too low.  They also have pulse ox machines that we put on them a couple of times a day to do a spot check of their blood oxygen levels and heart rates.  It's a hassle hauling everything with us when we go out and we're untangling chords all the time, but again, we're so grateful for all of this equipment so they can be home with us and the machines do give us peace of mind knowing that they'll alarm if they quit breathing.  (We had to take infant CPR before they discharged them from the hospital, but we sure hope we'll never have to use it).

Apnea monitors and pulse ox machines 

Here's everything we take with us when we go out:
portable oxygen tank for each, each baby's apnea
monitor, extra tanks, diaper bag and Anthony and Aryanna.
It takes us about 45 minutes to get organized to get
out the door.  Needless to say we don't plan on going
anywhere unless we have to!

We are very excited for Anthony and Aryanna to meet all their prayer warriors and for all of you to meet these two sweet little miracles. However, because they’re preemies and their immune systems are so fragile we would like to hold off on visitors for a little while. Aryanna got some sort of stomach flu last week even without being around anyone else so we just have to very careful, especially with them being on oxygen. We're anxious to show them off (we think they're pretty cute), but also want what's best for them.  We waited so long for them to come home from the hospital and would hate for them to end up back there.  We'll do our best to keep the blog updated and post lots of pictures :)

Reunited after a few days apart:

Baby Power!

Milk coma

Is there anything sweeter than a sleeping baby?

 Our little cuties:

Aryanna says, "Thanks for all the prayers!
I'm praying for all of you, too!"

Thank you for all the prayers!  We're so, so blessed and so grateful that they're home.  We appreciate your prayers for their continued growth and development, that they would continue to eat well and gain weight (Aryanna is 5 lbs 1.5 oz and Anthony is 6 lbs 2 oz now!!!) and that they would be protected from future illness.  

1 Home, 1 To Go

Aryanna came home Sunday night!!!  It was a little bittersweet - we were so excited to have her home, but we hated leaving Anthony at the hospital.  But we won't have to leave him there for long.  He's getting discharged today (Wednesday)!!!  After Aryanna left he decided he'd better start taking all of his bottles so he could come home too and got his feeding tube out Monday morning.  He had another head ultrasound on Monday and things still look good, so we just have to follow up with another ultrasound on an outpatient basis in a month.  The cardiologist also looked at his heart last week and the PDA (the condition that caused his heart murmur) that used to be very large is healing on its own and is much smaller!  Praise God!  We'll follow up with the cardiologist in 2 months.

As you can imagine we're exhausted and we just have one home!  We're so grateful that they got to come home this soon, though.  We'll do our best to continue to update everyone amidst the craziness.  Thank you for all the prayers that have carried them this far.  God is good!

Nothing But Good News!

Towards the end of last week we had a few uneventful days, which is great!  We like stable, uneventful days.  Now, the past few days we've had nothing but good news!

On Friday in speaking with our favorite nurse, who we've had on the weekends since the night Anthony and Aryanna were born, we learned that things could have very easily gone the other way when Anthony's brain bleed started.  The brain bleed really affected his blood pressure and some babies don't recover from that.  After a grade 4 bleed some babies start to have seizures and end up on seizure meds and Anthony never had to cross that bridge either!  She then explained that his next big hurdle would be learning to eat.  It takes a lot of work to coordinate sucking, swallowing and breathing and the bleed could have affected his ability to coordinate all of that.  On Sunday morning the nurse gave him his first bottle to see how he would do and he took THE WHOLE THING!  He just keeps showing us what a fighter he is.  When we spoke with the doctor on Sunday he was very hopeful about Anthony's hydrocephalus (the swelling in his brain).  His head circumference hadn't increased much over the week and he's gone over a week without needing a tap.  He thought things were hitting a plateau and that hopefully we would start to see a decrease in the swelling.  Yesterday after his head scan we learned that he's showing improvement!  For several weeks it had been stable (no change), so we were thrilled to know things are moving in the right direction.  He was supposed to have a consult with the new neurosurgeon this week, but they even cancelled that!  Also, on Sunday he came off the Vapotherm and got switched to wall oxygen AND we've had about 4 nurses now tell us how much better his heart murmur sounds, too.  He is such a miracle and we can't thank you enough for all the prayers.  We're so proud of our little guy!  God is so faithful!

So what's Aryanna been up to?  She's been learning to eat and gaining weight.  She hit the 4 lb mark on Saturday!   She's also rocking the bottles and is starting to get the hang of nursing.  When they did her labs yesterday her alk phos levels were back down where they should be so she doesn't have to take calcium anymore.  She is such a miracle, too.  We're constantly amazed at how well she's doing despite being born so early.  God is good!

And that's not the end of the good news.  Because they're doing so well they told us yesterday that they might get to COME HOME next week as long as they keep eating well and gaining weight!!! They spoke with us yesterday about car seats.  We had to make sure ours would accommodate little 4 lb Aryanna (Anthony is nearing the 5 lb mark) and it does.  When they hit 36 weeks gestational age this Thursday they'll have to take a "room-air challenge" and try breathing without their oxygen.  It's looking like they'll both end up going home on oxygen, but they sure do like to surprise us so we'll see. We are sooooo excited and sooooo terrified all at the same time.  I guess it's time to finish up the nursery, huh?

Here's a picture of our sweet little miracles - more pictures to come soon!

Anthony & Aryanna's Story From the Beginning: Our Journey Through Infertility

Anthony and Aryanna’s story started long before their premature birth or their summer-long NICU stay.  God started writing their story before we ever knew, but it started playing out in our lives 3 years ago when Jose and I started trying to have a family.  If there was one thing we knew, it was that we wanted kids.  We went through a long year of disappointment as month after month we weren’t getting pregnant.  Of course by that point everyone was asking when were going to have kids (that’s the natural chain of events after you get married, right?)  No one meant any harm, but every time someone asked it was another reminder that we didn’t have the baby we were hoping for. After a year with no luck we were referred to a fertility doctor and all the testing began:  bloodwork on this day, wait a month for more bloodwork on another specific day (and on and on), ultrasound, x-ray, etc, etc.  The result of all that testing?  I had endometriosis.  I had to have laparoscopic surgery and during the surgery the doctor discovered that I had a fairly severe case.  He did what he could to clear it up, but some of it he just had to leave alone for my safety.  

Even though the surgery wasn’t a huge success, we continued to pray for miracles.  That year our church was reading through Mark during Lent.  On a trip to Boone to visit my family Jose and I were reading through Mark 1 on our iPod.  He was driving and I began to read the following passage out loud:

A man with leprosy came and knelt in front of Jesus, begging to be healed. “If you are willing, you can heal me and make me clean,” he said. Moved with compassion, Jesus reached out and touched him. “I am willing,” he said. “Be healed!”  Instantly the leprosy disappeared, and the man was healed.
-Mark 1:40-42

As I read, I began to weep and cry out, “Jesus, if you’re willing, you can heal me too.”  My wonderful husband comforted me and assured me that God wouldn’t leave us childless and that one way or another He would bless us with children.  We talked about the testimony that God would give us through this whole journey and that we would share it for His glory.  After comforting me Jose asked me to read the passage again, but to continue on this time:

Then Jesus sent him on his way with a stern warning: “Don’t tell anyone about this. Instead, go to the priest and let him examine you. Take along the offering required in the law of Moses for those who have been healed of leprosy. This will be a public testimony that you have been cleansed.”
-Mark 1:43-44

Wow!  What comfort that brought us that God was going to give us a testimony through all of this.  It gave us hope when all we’d faced so far was disappointment, doubt, and difficult moments.  We’d faced friend after friend announcing their pregnancies.  I was happy for them, but most of them didn’t know what we were going through.  I had to go to work every day and see pregnant teenagers (how fair is that?) People made insensitive comments.  They didn’t mean to, but they also didn’t know what we were going through.  We had checked into adoption because both of us have always wanted to adopt.  Jose volunteered with an orphanage in Bolivia for years and I did an internship at an orphanage in Mexico for two semesters, so we have seen first-hand the need.  We went to a meeting to find out more about adoption, but left feeling like that wasn’t an option at that point.  Domestic adoption can be a long wait and both domestic and international adoption  are very expensive.  We decided that adoption would be better left until we could spend a significant amount of time in Bolivia and adopt there.  After going through so many struggles, this confirmation that God was going to give us a testimony gave us strength to continue on.

However, after more months of disappointment, I started to become bitter (we were going on 2 years of infertility by this point).  I remember asking God on more than one occasion, “What kind of testimony is this?  You’re not giving us a story to share!  NOTHING has happened.”  I bounced back and forth between this bitterness and trusting God. This journey was getting long and hard.

About 6 months after my surgery it became apparent that the surgery hadn’t worked, but the good news was that we were good candidates for IVF (In Vitro Fertilization) and my insurance would cover it.  We were excited to get the process started that summer, but then we were faced with more disappointment.  Because of various factors the timing wasn’t going to work out (it’s a process that takes a few months) and we would have to wait until the fall to start IVF.  After 2 years of waiting we were frustrated to wait even more.  Of course now on the other side of it I see God’s perfect timing in this so that I could be with my babies in the hospital during my summer off and so that he could continue to work on my heart.

We began to open up to more people about our journey through infertility.  It’s one of those things that people don’t really talk about and while we knew a few people who had struggled with infertility (they were a great encouragement and comfort to us), we didn’t know anyone who had gone through IVF.  Even though we didn’t know anyone who had been through this process, it was so comforting to open up to people and allow them to pray for us.  Our friends, family, and small group prayed for us more times than I can count.  We also shared with our youth group our desire to have a child.  If you want to be humbled, ask some teenagers to pray for you.  I cannot tell you the power of their prayers.

As fall approached, so did our church’s annual women’s retreat.  My friend, Becky, asked if I would be willing to lead a break-out session with her and share my story.  The title of the session was “Freedom to Hope, Even When the Wait is Long” and she wanted me to share because I was still in the midst of waiting.  I agreed and on my way home that day it hit me:  “That’s our testimony.  God is good, even when we’re not on the other side of the pain and we don’t know how it will all work out.”  It’s easy to stand up and say that God is good when everything has worked out, but to say it when you don’t know what lies ahead of you, that’s powerful.  So as we had just started IVF and didn’t know if it would work, that’s what I shared:  God is good, whether the IVF works or not.  We clung to that knowledge of his character and knew that he had good plans for us, even if we didn’t know yet what those plans were.

A couple of months later we found out the IVF was a success and we were having TWINS!  We were on cloud nine.  The next several months were 

Anthony & Aryanna as embryos.
Can you tell who's who?!

blissful and filled with glowing reports from the doctor.  Everything looked great!  As you know by now, things took a turn for the worst as things went from great to delivering our sweet babies 11 weeks too early.  Now that Anthony and Aryanna have made their early entrance into the world, we face uncertainty again.  Will their premature birth affect them later in life? How will Anthony be affected by the severe brain bleed he suffered and the resulting swelling?  Will I go into pre-term labor when we have more kids?  Last Sunday as we worshipped, God reminded me again of the testimony I had shared last fall as we sang these lines from “Desert Song” by Hillsong:


This is my prayer in the battle
When triumph is still on its way
I am a conqueror and co-heir with Christ
So firm on his promise I'll stand

I will bring praise
I will bring praise
No weapon formed against me shall remain

I will rejoice
I will declare
God is my victory and he is here

All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

I wept as we sang these lines and I was reminded that God is good, even in the midst of the battle “when triumph is still on its way” and all of our questions don’t have answers.  We will praise God for the gift of our children and trust his good plans for them as He carries us.  Even in this season we have a reason to sing because He is still God and He is good.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
-Jeremiah 29:11