Saturday, November 7, 2009

Arden's 2nd Echocardiograph

Eric and I took this trip solo. We got in an hour late b/c they were behind schedule, but we got to watch some families that were there with their kids... somehow that was encouraging. We went back into the echo room where the same tech did all the imaging and Dr. Bhat came in as well to talk with us and oversee the captured images. We were VERY impressed with her again. She came in and started talking to me and then remembered Eric's hearing and apologized, looked at him, repeated what she said and asked if he could hear her and see her in the dim lighting. She then made sure that she spoke up and faced him. When it was time to do the "UCD talk to the med student" thing, she explained to both of us that she was going to switch from bedside talk to medical talk and if we needed to, we could interrupt her and the student, but would probably be mumbling and was that okay with Eric. He said fine and we smiled at each other. Such different treatment than Mercy.

Dr. Bhat explained that in her experience there was a loose 30/30/30 rule. 30% of babies will go downhill, 30% will stay the same, and 30% will improve... we didn't talk about the last 10%. After looking at the images, she said that Arden's heart looked about the same as it did last month so she felt we were in the 30% that would remain the same. This means that I'll hopefully be able to carry Arden to term and the future procedures will be able to be planned a bit more instead of reacting to an emergency situation. Dr. Bhat said that the only difference really was the pressure building on the left side of the heart, but that the heart had created two extra holes in the atrium septum to help release some of that pressure and that this was both unexpected and good! So PTL for that.

After our echo, we met with the pediatric heart surgeon that would be working on Arden's heart. He told us what we might expect after Arden is born but that we wouldn't know for sure until she was actually born. He talked about using a bypass machine that would breath for Arden along with pumping her heart so they could watch the pressure on the left side of the heart after she was born and go into surgery with more information. It was hard to hear that she might be on a machine, but that it was to give everyone more time: doctors to gather information, Arden to grow/develop more, etc. Again, we won't know if this is needed until after she is born. One uncomfortable moment was when he said that UCD would not be equipped to deliver the baby the first week in January due to staffing problems. If I naturally go into labor during this time, I will be forced to deliver at UCSF or Stanford. We asked if we should just transfer our care down to Stanford (our choice of the two) now and they said it was our choice. Although me going into labor 2-3 weeks early probably won't happen due to my history of having to be induced with Elliot, we didn't want to walk into a hospital without them knowing who we were. So Dr. Bhat said she would share all of our information with the dr. at Stanford in her position so if the situation arises, they would know who and what they were dealing with. This made us much more comfortable!

After the appts and meetings were over, Dr. Bhat said she had also scheduled a tour of the NICU for us if we had the time! Of course we did! So we drove over to the main hospital (a dry run for January), found the maternity parking, and went to the NICU. They were great. The security, the cleanliness, the personnel. All of it was above our expectations. The hardest part of the tour was actually walking into the rooms. We thought we'd just be shown the outside of the rooms b/c we weren't parents of the children, but we were cleared by those inside before we walked in, and we were hit with a serious taste of reality. Seeing the babies with tubes, and bandages, and breathing machines was really hard for both of us. Thinking of your child in that condition and seeing what it will look like were two different things for us that suddenly were crashing together. We cried. Well I did, Eric teared up and then gave me a big hug which seemed to shut off his tears and make mine fall harder. How does that work? While on the tour we were also able to see Labor and Delivery (huge rooms!), and the PICU where Arden will go after her surgeries before going back to the NICU.

All in all, it was a good trip with lots more information and experiences that gets us one more step closer to her birth. Please keep praying as we continue forward. Prayer for the team of doctors that will be working with both Arden and me, prayer for Eric and I as we continue to rely on our faith (have no idea how we would be still be going if we didn't have Jesus), prayer for our support networks as they continue to help us and process all of this in their own ways, and prayer for little Arden that she would remain strong and continue to do things (like making more holes in her heart) that pleasantly surprise the doctors. Elliot is doing better with our trips to the doctor which is a huge answer to prayer! A family friend has stepped in and said she would walk with Elliot as we have more and more appointments, and the consistency (not to mention her amazing personality and way with Elliot) has done him wonders!

The next appt is tomorrow (thursday) for my first OB at UCD. I'm praying that we'll catch a break somewhere and by a miracle, I'll have passed my 3 hour test. If this is true, you are all invited to a cheesecake feast at our place! I'll let you all know what happens tomorrow. Thanks once again for your humbling support and prayers!!! It is the most you can do and we are honored. Thank you.

2 comments:

Erin said...

Pearcia, I have been reading your blog about Arden for a bit now, and I wanted you to know that I am praying for your little girl.

My son also has a rare genetic disorder that he was born with and I wasn't sure if you were aware of the programs available for you. I am not sure what your healthcare plan is like, but if Arden is going to need a NICU stay and surgeries, I am guessing this might cost a little bit.

I wanted to encourage you to apply for CCS (California Children's Services) for Arden. It helps children who are born with all kinds of problems. Even my second child who was just premature and needed a NICU stay qualified. And if you get in, their entire medical bill is paid in full.
Check it out:
http://www.dhcs.ca.gov/services/ccs/Pages/default.aspx

Pearcia LaPointe said...

Thanks Erin! We are on Medi-Cal, but I will most definitely look into that!