Saturday, December 31, 2011

Feeling the Love!

Thanks to everyone who has sent words of encouragement! We've been showered with love and appreciate all the notes, emails, texts, flowers, yummy treats, and gifts. I decided to make this board and hang it in Drake's room. (Yes.... I just spilled the name!!)
Everytime I browse through it's contents I'm moved to tears. We know our little guy is covered in prayer. The Lord is near to him, and near to us. God has been working through
others to remind us that he is there, always. He knows our little ones name.... and now you do too :)

Isaiah 43

1 But now, this is what the LORD says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.

2 When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
3 For I am the LORD your God,
the Holy One of Israel, your Savior;
I give Egypt for your ransom,
Cush and Seba in your stead.
4 Since you are precious and honored in my sight,
and because I love you,

I will give people in exchange for you,
nations in exchange for your life.
5 Do not be afraid, for I am with you;
I will bring your children from the east
and gather you from the west.
6 I will say to the north, ‘Give them up!’
and to the south, ‘Do not hold them back.’
Bring my sons from afar
and my daughters from the ends of the earth—
7 everyone who is called by my name,
whom I created for my glory,
whom I formed and made.”

Wednesday, December 28, 2011

Photo Shoot of Mom, Dad, & Baby P

Before all this happened, I was sort of anti-belly/maternity photos. Knowing that we don't know how long we have with our little guy, my outlook totally changed. I decided I wanted to capture as much of this pregnancy as possible. Of course, still desperately hoping I get to hold him in my arms and take all sorts of photos of him once he's here! My wonderful friend, Jess, willingly agreed to take some photos for us. I'm so happy with how they turned out and we will treasure them forever!

Friday, December 16, 2011

The Heart of the Matter

Many of you have probably already heard, but our little guy in tummy is currently experiencing heart failure. In case you did not see the email I sent out last week (sorry if I accidentally missed you or did not have your email!) here is the lowdown:

After noticing some concerns on one of our ultrasounds, one of our physicians referred us to a pediatric cardiologist here in Santa Barbara. This was back in mid-November, and we couldn't get into the pediatr ic cardiologist until December 6th. Initially, they didn't think it was anything urgent, so the wait was not a problem.

On December 6th, we had our appointment with the pediatric cardiologist. It was during this appointment, that we quickly realized there were some significant concerns regarding our baby's heart. I can't even begin to explain the emotions that flooded as we sat there and tried to digest what he was saying. With the equipment he had, he couldn't exactly tell what was going wrong, but he could see that the heart was not functioning properly. He told us he believed our baby was "in danger" and asked us if we could get to UCLA soon. We said of course, that we would do whatever we needed to do. He asked us to wait for a few minutes while he went to call his colleguages at UCLA. He came back in about 15 minutes and told us he had booked an appointment for us at 9:00 a.m. the next morning. A little alarming that it was all happening SO fast, but we were also very glad there would not be a long wait for us to get more information.

That afternoon was very emotional, especially for me. I had asked the doctor if there was a chance our baby might not make it, and he said yes. The answer I DID NOT want to hear. I was heart broken and terrified. How is it that this was happening? I've known lots of people who have had pregnancy complications, birth defects, and scares a long the way. BUT how was it that all of a sudden MY baby might not make it?? At 26 weeks, I really thought we were in the clear. Jon was very supportive and comforting that day. Although he was also nervous, he went into caretaker mode and did his best to keep me staying positive. Neither of us slept much that night.

The next morning we left at the crack of dawn to beat L.A. traffic to make it to the appointment at UCLA Hospital. There we had a two hour appointment with ultrasounds and fetal echocardiograms with the Chief of Pediatric Cardiology at UCLA. The entire team there was wonderful and made the experience as pleasant and peaceful as one can ask for under the circumstances. This time, I was in "crisis" mode and had my social worker hat on. I was prepared to hear bad news, ask questions, take notes, and just try to take it all in. It must've been by the grace of God alone that I remained calm and totally at ease for the hour I had to lay on that table in various awkward positions while they looked at Baby P.

Then they shared their findings. Our baby is currently experiencing heart failure. Although his growth is on track and all his other organs look good, his little heart is not functioning properly. I won't go into the extremely technical details, but feel free to ask if you want to know more. Basically, the Dr. said that there was no technical diagnosis for what he was seeing. It wasn't consistent with any heart defects he has seen in the past. The gist of it is that the baby's heart ventricles were thickened (causing weakness) and the valves are not opening and closing correctly to allow for proper blood flow. His heartbeat has remained strong despite this and all the structures of the heart are in the correct place and well formed. However, since his heart is already beginning to fail him, they are very concerned that it may get worse as he grows.

The doctor at UCLA said that in fact he expects it to get worse, but there is always a small chance it may get better. There is nothing medicine can do at this point. No in-utero surgeries and it is too early to take him out, especially given his fragile condition. There is a significant chance our little guy may not make it out of the womb. There is no way to tell, we just need to wait and continue to monitor him as long as he remains alive in my belly. If he gets progressively worse then they will likely operate via C-Section and take him out early. If he stays the same, they want to wait as long as possible to deliver him with the hopes that he will continue to grow stronger. The doctor optimistically pointed out that sometimes babies do amazing things and just get better with no explanation- he has seen that happen too.

No one has any idea what has caused this, it may just be a genetic abnormality. Which means there could be other underlying genetic conditions that have just not shown up yet, but so far all the genetic testing has come back clear. We were told that there is nothing we can do differently. I don't need to be on bed rest, we don't need to be hospitalized, we just need to wait and continue follow up with doctors and be cautious of any signs of miscarriage or of pre-term labor.

If he makes it through to delivery (which of course is our prayer!!) then I will be delivering at UCLA where resources are high and the Cardiac team is one of the best in the country. He will have battles to face once he is born, heart surgeries and possibly even a heart transplant.

SO in sum- we have a journey ahead of us with this little guy! We have no idea what it will look like and what the timing will be. This all happened last week and so far nothing has changed as far as we can tell. We went in for one follow up appointment with our OB here in town. She checked on his measurements, heart rate, and all that. No new updates. I find great comfort every time I feel a little kick, or even better, a big one!

As I asked in our email to friends and family, please join us in praying for recovery of his heart. We'd love to be one of the cases that the doctors just don't understand how he was healed and witness one of God's miracles happen in our little babe. All our hope is that he is a little fighter and is going to make it through this! We just don't know. Please also pray for us- that we have the strength and peace to deal with whatever may happen. We know he may not make it. Of course we can't bear the thought of losing him and we will continue to dream about raising him as our son, but we need to be realistic in how we cope and process all of this.

I will continue to blog and post updates, but if anything major happens, my posting may obviously be delayed.


I've fallen behind on blogging again. A LOT has happened! Let's start with the fun things.... in the next post I will update you on the not so fun things.

We enjoyed a wonderful trip to Hawaii over Thanksgiving. A "baby-moon" trip if you will. Despite missing our flight on the way out (UGH- L.A. traffic and a NIGHTMARE of a parking mishap), we made it over to Honolulu all in one piece. The trip was very relaxing and we spent a lot of time sitting on the beach, one of my favorite hobbies. Although we are surrounded by beaches here, there's nothing like a tropical beach! The water was MUCH warmer and clearer. The weather was also much warmer, but I will not try to claim that it is "cold" here now because I know better :) One of my longtime bestest friends and her significant other had decided to take a trip for her 30th Birthday, and they conveniently agreed to join us in Hawaii. Also, coincidentally, some of our very close family friends also happened to be spending Thanksgiving in Hawaii. It was very fun to have such quality time with great friends.

Here is the next "belly" shot. At the top of Diamond Head Mountain in Honolulu.