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.


Kristin Devine Mueller said...

Stacy and Jon,

I had found your blog through Wendy and was keeping up with the baby news. You and the baby will definitely be in my prayers! I'll be praying that God will work miracles far above and beyond anything the doctors can explain.
Love and prayers from Chicago,

robin long said...

Hi Stacy & Jon,
Matt and I are praying for you from up North. Praying for peace, comfort, faith, health & growth.

Sending lots of love.
Robin & Matt

Liz V, said...

Read more of the details here today - have been thinking of you guys and praying! Also love your outlook on all this, the Drake encouragement/prayer board idea, and how you're handling this crazy stage lady! Way to go to both you and Johnny - can't imagine all that you already have and continue to work through, but I see your resilience, creativity, faith and wisdom shining through, which makes me so grateful. Much, MUCH love to you three!