Update on Baby B's Heart

I guess I've been putting off updating my blog because I knew I would have to add some not-so-great news, but really it is what we expected. After this, I promise to resume to some more fun posts about what's going on in our lives! Also, if you already received an email with this update, I pretty much copied and pasted the results. It takes alot of energy to explain something I know little about, so I decided I would just cheat and type it once! :)

We have a clearer diagnosis on what is going on with Baby B’s heart. We spent about 4 hours at the doctor’s office in Pensacola last Thursday. Two of those hours were spent in the ultrasound room while they looked mainly at Baby B’s heart, taking pictures and evaluating. There was a whole team of ultrasound techs and two doctors who evaluated his heart. It appears he has truncus arteriosus. Let me begin by saying I know very little about anatomy in general, so I’m in the process of trying to educate myself better on the anatomy of the heart. Truncus arteriosus is a “congenital defect present at birth. The aorta and pulmonary artery normally start as a single blood vessel, which eventually divides and becomes two separate arteries. Truncus arteriosus occurs when the single great vessel fails to separate completely, leaving a connection between the aorta and pulmonary artery. Truncus arteriosus is a complex defect where there is a single (normally there are two separate arteries) vessel arising from the heart that forms the aorta and pulmonary artery. Another congenital heart defect that occurs with truncus arteriosus is a ventricular septal defect (ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles).” That’s the basic info. If you want to read more about the condition, and/or see pictures, there’s great info on St. Louis Children’s hospital website: http://www.stlouischildrens.org/content/greystone_690.htm I was shocked that this occurs in less than 1 out of every 10,000 births!

Brian and I had mentally prepared ourselves for news like this and although we are very sad that everything is not “perfect” or “normal” we are very hopeful that the outcome will be okay. The average time that surgery is needed for babies with this heart defect is 11 days after birth. So, we’ve been strongly advised to deliver at a hospital that has all the right people (surgeons) and staff equipped and READY to handle this type of situation. The staff at the doctor’s office we go to now, in Pensacola, are doing the work of getting all the approvals and referrals taken care of through our insurance. If all that goes through (which the doctors think will go through no problem), we have chosen to deliver in St. Louis. I will most likely have to be in St. Louis by 32 weeks, mid May. Past that, going into pre-term labor elsewhere is the fear. This is where, oddly enough, my emotions get the better of me. We’ve chosen St. Louis for obvious reasons…our amazing families who will be called upon A LOT to help with Nolan for a couple months. I’m really excited about the idea of having Nolan be around family and friends for an extended period of time, without having to rush around and see everyone in a one or two week time period. But of course, the reality is I won’t get to be there much of the time, I will probably be in a bed or on a couch (and yes, eventually the hospital). And Brian won’t get to be there the whole time, so being separated from him during the latter part of my pregnancy makes me incredibly sad, not to mention scared that he may not make it there in time if I DO go into labor earlier than expected. And as much as I love being in St. Louis and I love you all so much, there is no getting around that I feel like we are uprooting ourselves. Temporarily, I know, but there are still good friends I adore here and what’s extremely upsetting is that a few of these friends will be moving during the time that I’ll be in St. Louis. And that’s just a bit of the self pity I’ve felt. I won’t go into my fear of the “what-if’s” with Baby B. I will just say that no matter what, our first priority is keeping these babies safe. And my other first priority is Nolan and making sure this transition into big-brotherhood doesn’t make him feel like he is forgotten. Or not loved as much. Because lately, I love him more. More everyday, in fact!

How cliché to say, I never thought one of my children would have a heart defect. I never saw this coming. We will not stop praying for these beautiful babies, and believe 100% that God has laid His hands upon them and that this is part of His greater plan. I am so thankful for the friends here in town who have stepped forward and helped with Nolan and given support. And we’re so grateful for thoughts, prayers, emails, cards and phone calls everyone. We’ve felt so encouraged and blessed and have certainly felt loved!!!

I am also now on modified bed rest, meaning for 2 hours a day, three times a day, I need to be lying down. I’m trying really hard to listen and not do anything around the house but take care of Nolan and rest, because the alternative will be full bed rest and I really don’t want that! Please keep Brian in your prayers as he takes on a lot of extra responsibility. It’s temporary, but after a long day at work, I feel bad (and like I’m not doing my job) that he has to come home, clean up, do dinner and play with Nolan. We have many more decisions to make about logistics and a lot of unanswered questions that won’t be answered until we are in St. Louis and talking with the team of doctors/surgeons there who will deliver and operate. I really like to think of myself as a “go with a flow” kind of gal, but God has really showed me that I’m very far from that. When things don’t fit exactly into my planned box, I am very uncomfortable. Having so many unanswered questions and “what-ifs” and yet so much planning to do, makes my head spin, but I know we’ll manage just fine.

Thanks for listening to my long winded update. We just ask, if you can, that you continue to pray for us. Honestly, I can’t tell you how much comfort these prayers have brought to our family. “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 NIV

Here are a couple pictures of our precious babes from Thursday. At one point one of them (and I honestly can't remember which one right now) was wiggling around and we saw a good angle of his face and Brian and I both gasped at the same time. We looked at each other and said, "He looks just like Nolan!!!" It was such a special moment and one I've been waiting for since the day we decided we wanted to give Nolan a sibling!!

Baby A:

Baby B: