June 23, 2010
Hi everyone…sorry I am just now sending an update from our Little Rock trip, but we did not get back until last night around nine. All three of us (me, Daniel, and mom) were exhausted. I am so glad they were able to go with me. Daniel can now explain the inter-workings of the human heart better than most. He actually understands more about Glory’s condition than I do…and that’s the truth. This was a huge answer to prayer because I am not good at understanding the details, and Daniel was able to give incredibly accurate details to Philip.
After visiting with heart doctors, heart surgeons, general nurse practitioners, and a near 2-hour fetal echocardiogram, I wish I had more hopeful news to report. A bit of good news is that, as far as the heart doctor and heart surgeon can see, her heart still appears “repairable”. He even saw some blood flowing through the left side of her heart in a place where in most Hypoplastic Left Heart patients, there is none. He said that was good, and that the left side of her heart that has not developed fully is by no means the worst case he has seen. The heart doctor and surgeon both seemed very hopeful that the surgeries that they have mentioned would have a good chance of being successful (keeping in mind that any heart surgery has many risks, especially in infants). As I mentioned above, if anyone wants more detail on her heart, Daniel can draw you a good diagram! The reason that it took them around 2 hours to complete the echocardiogram was that Glory was more active than I have ever seen…she was not really cooperating, but we see that as a sign that she is strong and is a fighterJ
The less hopeful news was that they still do not see any fluid in her stomach. In addition, when we talked to the general pediatric nurse practitioner about this, she told us that, if she does in fact have one of the more common esophagus, trachea, or stomach conditions, the prognosis for an infant with both of those conditions (heart and esophagus/stomach/trachea) is most often fatal. As a whole, we did not think that the doctors felt that this condition would just “correct itself” at birth as was previously thought, although that is always a possibility. She explained that if Glory just had one or the other of the conditions, she would have a fairly good prognosis either way. But when an infant has both, it is very hard for them to survive that many major surgeries, especially when it involves her heart and breathing (trachea). She told us we can still be hopeful because we do not know what her swallowing condition is, and will not know until she is born…we are still dealing with an unknown. The heart doctor and surgeon seemed to think that her success will, in many ways, depend on the severity of the esophagus/trachea condition upon birth. However, as my mother-in-law said last night, that is not the only reason we have to hope…we will continue to hope, regardless of what the doctors tell us, because of who our God is.
Overall, some of our hope was taken away, but it comes down to waiting until she is born to see what her actual condition is. They scheduled our C-Section for Thursday, July 22nd at UAMS. We were able to tour UAMS Labor and Delivery and the NICU at Children’s. This was helpful just seeing where we will be and where she will be while they work to determine her condition after birth.
My hope is less right now, but I know God is still in control. I am still waiting and hoping for good news, although I know it may not be in the form I want it to be in. Please continue to pray as the Spirit leads you…our God is all-powerful.
Philip is doing better… we see his urologist tomorrow for a surgery follow-up. Hopefully, he will be moving around a little better in a few days. Please know, even if I have not returned your phone call or replied to your e-mail, that each message and each meal that we have received has been a true blessing. We still continue to rely on your prayers, and it is always a blessing to share with you…
Love,
Kerry