What's black and blue and sore all over...

...my tummy! Thats right, today's cardiac ultrasound left me pretty bruised thanks to Olga the technician and her scary wand. Actually, she was very nice and explained that as Brynn gets bigger it becomes more difficult to get good images of her heart. And she has been getting bigger! I put on 4lbs last week (although I think that was more from going on vacation with a personal chef)!

We saw the OB yesterday who measured my at 28 centimeters (normal) and clocked Brynn's heart rate at 14o (perfect). Today's cardiac appointment went very well. Tony's parents were kind enough to accompany us in spite of warnings that these appointments can be long and difficult. Olga gave them a brief view of Brynn's face and body. She had one hand up over her eyes drama queen style. :) They weren't able to get great pictures this time but the doctor reported that the ductus has not changed size! It is still small but does not seem to be affecting her growth or putting her in any distress. The doctor reported that due to the fact that Brynn's whole circulatory system is different from other babies there is no way to tell if her brain development has been affected at all until she is born. Many of the babies are fine, however, some do experience delays.

The doctor said they will continue to monitor me every two weeks, alternating with my OB so I will be seen at least once a week for the rest of the pregnancy. I am really relieved that we won't have to wait a long time between visits to get confirmation that Brynn is doing well.

It's hard knowing that they could possibly deliver me any time between now and September but we are hopeful that Brynn will continue to grow and that the ductus will continue to stay open. Please continue to keep us in your prayers...I really think they are working! I know my own faith is strengthened every time we get positive news. Thank you for everyones support through this whole process. It means so much to us.

Always remember...you are not broken...

This is a story that I think gets passed around all the "Heart Mom's" blogs. I found it on one of the blogs I have really enjoyed. So far, it is our favorite explanation for our daughters heart:

"It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Yesterday the cardiologist emailed me to let me know that she has contacted several colleagues to see if any of them might have more information on the findings from the last scan. Hopefully they will have seen a restricted ductus before and give us some more insight on the best way to treat the condition. She also requested that we come back in two weeks instead of four so now we will be seeing them next Friday at 10am. We also have our OB appointment next Thursday so we will get to see/hear Brynn twice in one week! She continues to kick and squirm pretty frequently which is a great relief to me (she's still in there!).

We decided to register over the weekend despite our setback. We are hoping to remain positive and optimistic. Our wonderful friends Amy and Steven and their beautiful baby Liam were very helpful with this overwhelming process ("Don't waste money on that, we never used it!"). At times, registering made the differences between our baby and a "normal" baby glaringly obvious. Breast pump? Nursing bra? Bottles? There is a good chance Brynn will be fed special formula through a feeding tube the first few years of her life. No reason to register for those items yet, until we see if she will be strong enough to regain her suck and swallow reflex. Crib? Stroller? Car seat? Yes, yes, yes! Hopefully she will need all of these upon her return from the hospital. We even found a mobile made with tiny hearts. :)

Update

Today we had our follow up visit at Lucille Packard to get more images of Brynn's heart. The fetal echo process is basically a very long sonogram that focuses on the heart. The process varies from uncomfortable to painful for me since the only way they can get good images of the heart is to dig the wand in to try and get the best angle. At least this time she was big enough that they didn't have to dig quite so much.

The technician was learning on a new machine which was frustrating but I think he felt bad that it was taking so long. At the end of the appointment he showed us some 3D images of her face and body which my Mom loved since she hasn't gotten to see her yet.

The doctor came in as they always do at the end for more pictures and to talk to us about what they saw. Our doctor reported that everything looks the same from the previous scan except that the ductus between her pulmonary artery and her aorta appears to be restricted. If this ductus should close all the way it would stop her flow of oxygen and result in death. Interestingly, the doctor reported that in her 17 years of practicing medicine she has never seen a restricted ductus before except in one other case which happened to be just earlier this week. For this reason, she isn't sure what caused it or what the chances are that it will close. All we can do is pray that it continues to stay open. When the doctor looked at the scans from four weeks ago she found that it was restricted at that time but went undetected by the doctors. We're not sure if that's because it is so rare and they just weren't looking for it, or if the heart was still too small at the time for it to be noticeable.

This adds another layer of anxiety and worry to the pregnancy. For the last month we have been thinking that at least while Brynn is still inside of me her heart is functioning normally and it is only after she is born that we will have to worry about repairs. Now, we have the realization that her heart might stop functioning properly before she is born. We will return in four weeks time for another scan. If the duct has become even more restricted the only option would be to deliver her early. However, a premature baby with a heart defect of this magnitude would most likely not result in a good outcome. Please pray that Brynn's heart ductus remains open enough that we can deliver her full term.

After our scan we met with the social worker and got to take a tour of the cardiovascular ICU. Although it was overwhelming and difficult to see all the little babies hooked up to machines and fighting for their lives it gave us some comfort to see so many other families coping so well. Now we have a clearer picture of what to expect and prepare for.

Please continue to pray for Brynn. She has been such a fighter so far and has brought us so much joy. We know her fate is in God's hands and that He has a plan for her. Thank you for all of your support and prayers over the last few months. It really gives us comfort to know that so many people are rooting for our baby girl.

Background

In April, Tony and I found out that we are having a baby girl! We decided to name her Brynn Elizabeth Watts, which means "strong woman of God". We found out a few days after the initial sonogram that I have a two vessel cord (most umbilical cords have two veins and one artery, I have one artery and one vein). By itself this doesn't necessarily mean anything but it can be an indicator of some birth defects and classifies the pregnancy as high risk. We were told to come back for a more detailed scan.

It was at this second scan that the doctor told us that in addition to the two vessel cord Brynn has a severe heart defect: the right side of her heart is significantly smaller than the left. The combination of these two anomalies made the doctor suspect that she had a chromosomal abnormality. They performed an amnio right there. Tony and I went home to wait for 72 hours for the results. The first panel cam back normal, followed a week later by the entire panel! We were overjoyed and began to focus on what we needed to do to fix Brynn's heart.

Four weeks ago we went to Lucile Packard Childrens's Hospital for a fetal echo. The echo confirmed the diagnosis of a Hypoplastic Right Heart, which you can read more about here: http://congenital-heart-defects.co.uk/hypoplasticrightheartsyndrome.aspx.

We began at that point to research and prepare for a delivery at Lucille Packard followed by open heart surgery. We had to switch OB's since our original doctor does not have privileges to deliver at Stanford. Since then we have met our new OB and she is very nice. Everything else in the pregnancy is going normally.

We decided to create this blog so our friends and family can follow Brynn's progress and learn more about congenital heart defects. We know we have been given a very special gift in Brynn and we believe that her story can provide hope and strengthen faith.