The other condition is that she cannot have had an apnic episode in at least a week. Unfortunately, she is still having these fairly regularly, at least 1 or 2 a day. The last one was a 3:00pm today when Matt was giving her a feeding. The hope is that as she draws nearer to her original due date (July 3rd) and gains more weight, these will disappear. The babies would have been 38 weeks this past Saturday so we have a couple of more weeks of gestation to go, although it may not take that long. Please pray that these apnic episodes will cease so we can fully focus on her weight gain & getting her home as soon as possible.
We also need your prayers for one other thing. Matt met with the cardiologist on Friday to receive an update on her heart care. They are continuing to keep her fluids fairly low (meaning she only takes about 41cc per feed) so that her system is not too flooded with fluid, which can put more stress on her heart. That is why her weight gain has been somewhat stunted up until now - they haven't wanted to overfeed her and make the situation worse. As she grows, she will be able to tolerate more in her feedings. The cardiologist was pleased with her feeds and her growth, all good news. However, one area of concern was that some of her stats are starting to make a downward trend. Specifically her pulse ox levels, which measures the amount of oxygen flowing in her blood. It could be the first sign that her heart is beginning to have trouble and could potentially indicate that we will need to intervene sooner rather than later surgically to begin the heart repairs.
Having the surgery does not necessarily indicate more danger for her or her prognosis to lead a normal life. However, having the surgery earlier means that most likely they will not be able to do the complete repair as hoped. Instead, she will likely need 2 surgeries to complete the entire repair -- the first one for a temporary fix & the second to completely take care of the problem.
Obviously, the better option for Quinn is that we are able to put off surgery as long as possible - hopefully to 4 to 6 months of age. So will you please pray that her stats are able to reverse and her little heart will begin pumping more efficiently? We just want our little girl home for as long as possible before she has to undergo any other medical intervention.
Despite the stress of having a newborn at home and one in the NICU, Matt and I do realize how immensely blessed we are. I read a blog yesterday of a little boy who was being treated in Dallas for a devestating congenital heart defect (CHD). They found out at about 21 weeks about his issue (around the same time we found out about Quinn) and knew that the prognosis wasn't great. They made all the same calls and had the same appointments that Matt & I had. They even actually looked into TCH just as we did and eventually settled on treatment in Dallas. Their little boy was born about 4 days after Ryan & Quinn and in 5 days, had at least 4 surgeries to attempt repair on his precious heart. This weekend, their little boy lost his battle and went to be with Jesus. I cried as I read that blog last night and heard the news. So as bad as we may feel that Quinn is going through her issues, and even knowing that her survival is not 100% guaranteed, we know that the situation could be much much worse. Please pray for the family of this sweet baby boy as they grieve through what has to be one of the most painful losses anyone should have to endure.
Thank you, God, that our sweet little princess is doing well despite having a "different" heart. Thank you that she is gaining weight and continuing to maintain her spunky attitude. Thank you that her big brother continues to thrive and grow at home. Thank you for the entire medical team that has worked to assist our daughter - every single neonatologist, cardiologist, attending physician, pediatrician, nurse, and volunteers who rock her when we can't be up there. We are so grateful. She is in the best hands possible, and in Your Arms ultimately.
Oh --- and a little fun fact for the day...everyone keeps asking me if we have seen Jen from TLC's "The Little Couple". (If you haven't seen that show, you really should watch one night. It's about a "little couple" in Houston and they have to have one of the sweetest & most genuine relationships I have seen.) Anyway, Jen is a neonatologist at Texas Children's and works in the NICU there. Ironically, the first day we were in the hospital, Matt was going down to the NICU to see Quinn and saw a little figure in a white lab coat get off of the elevator right in front of him. He quickened his pace to catch up to her and asked her how she was doing :) Now, my husband has seen seriously maybe one episode of the show just in passing, but even he knew about her. Anyway, she was very sweet and said she was doing great that day & in conversation Matt told her about Quinn. She said that where she was located was not in her rotation but assured him that everyone would do what they could to keep Quinn safe and sound. What's really cute is that all around the NICU they have these hand sanitizer dispensers about 18 inches off the ground for her - and have a couple of little stations with low-lying sanitizers, a step stool and purple gloves. Pretty fun. At least it takes some of the sadness out of going to the NICU - we can be on "Jen Watch" :)
Anyway, thank y'all for your continued prayers. Here's our little princess picture for the day!