I'm sorry it has taken so long for me to update everyone on Rhae, but for those of you who have been to Omaha, I'm sure you know, things happen at a different pace out here! This is our 2nd time here, and things seem to move at break neck speed! Anyway, I'm sure most of you know by now, but for those of you who do not, we made it to Omaha and Rhae did NOT have to have surgery! We flew out Wednesday with a wonderful organization called Pilots for Christ (a whole OTHER post in itself for a longer night!). Mom met us here. On Thursday morning, we had to be at the hospital at 7:45 for xrays and an echocardiogram. The night Rhae was admitted to the hospital, the doctor in the ER made the comment her heart looked a little enlarged. Well, with everything else that had been going on, it didn't cross my mind again until several days later. When the nurse from Children's called for the pre-surgical screening, she asked about any heart problems and I mentioned the xray to her and the fact that Rhae has had a fast heart rate since birth which made me wonder if her heart looked large because of the smallness of her chest, or if it could indeed be enlarged. She talked with the anesthesiologist and they decided we would have an echo before surgery to make sure it wasn't a problem we didn't know about during surgery. We were also getting chest xrays to make sure her pneumonia had resolved, and looking at the arm one last time to get a good look and decide on hardware. Well, lo and behold, to our surprise, the same bone that didn't show healing on Monday now had a small callous formation, which you see when healing begins! So we were able to bypass surgery and have a custom brace applied to the arm! Praise God! He knew I wasn't ready to send my baby to surgery! I still worry about the bone being weak because this is the 3rd or 4th time it has broken in the same spot, but Dr. Esposito didn't say anything about it, only it would take at least 2 weeks for this to heal. I worry it may take a little longer, and worry about her muscle tone getting weaker than it was already with this arm being wrapped up for a total of 5 weeks IF it heals on time! Her chest xray still showed some reminants of pneumonia, so it is really good we didn't have to go through with the surgery, since her normal respiratory effort is already compromised and this would only have increased her risk during surgery. Her heart was ok. Her chest has a deep sunken area below the sternum, called pectus excavatum, which is so deep it is pushing her heart back and to the side, which makes it look enlarged. She also has a small valve prolapse at the top of her heart. However, the echo was read as normal. I'm still a little concerned over that, as I feel if it is a mitral valve prolapse, she is symptomatic with tachycardia, but if it is something else, I want to know what and should we be doing anything about it. Either way, I have access to a wonderful pediatric cardiologist in Birmingham and plan to make an appointment with him soon to follow-up. I feel at the least, we should be followed yearly with an echo and check-up. We are still in Omaha and will hopefully head home on Tuesday. I am waiting to hear from the nurse practitioner who works with the OI clinic here to see if we can go ahead and get Rhae's PAM treatment tomorrow while we are here since she is due for it on Thursday anyway and would mean us getting home Tuesday or Wednesday, then having to turn around and be in Birmingham (2 hours from home) on Thursday. Travelling makes Rhae so ill, and usually takes a day or so to get over and I feel she has been through enough already. Hopefully they will agree and we can get home and just relax the rest of the week!
Thanks to each of you for the continued prayers. God has so abundantly blessed us over and over, not just the last few weeks, but for the last 2 years with my pregnancy and Rhae's joyous being! Please pray for a safe trip home for both us and my mother. Please pray for a friend, Ashley, who is in her 6th month of pregnancy with her 4th child. She has been put on bed rest for the remainder of the pregnancy and needs several more weeks for the baby to mature before birth. Also, as you say your prayers, please pray for the sick children of the world. Being here puts us in contact with so many parents of children who are very sick and those who have been and are healing. It makes you realize how blessed you are to have healthy children when you sit and talk with some of these parents.