Day 37--May 16, 2009

Today was another good day. Katie better watch it, she is spoiling ol’ mom and dad. We are beginning to expect great things. Truth is, we are just barely getting to that magic number of 40-45ccs of milk taken orally. Also unless we feed her, the nurses can only get her to take 15-30ccs, rightfully so though. These nurses are working so hard to tend to all of these hapless children that they do not have the luxury of sitting, begging, and cajoling Katie to eat. Quite frequently another child’s monitors will sound, and the nurse will have to go to that location.Today Beth and I managed to get 37, 42, and 43ccs into Katie. These numbers, while still relatively small, absolutely demolish the 4s, 5s, and 10s we have been accustomed to.Beth and I take great pride in being able to get her to reluctantly take 40+ccs most feedings over the past two days. However, believe you me, it is a down and dirty scrap to get her past the 20 something mark. This parental fortitude and passion has been noticed by the regular nursing staff. Twice tonight, by two different nurses we were asked “Why are you still here?” Our reply is a simple but honest “We don’t know.” We were told that the only reason she was still here that they knew of was for feeding, and that we had shown we were willing to fight to get her to do what few if any of the nurses could. It was suggested that we speak to her attending physician and see if he would consider letting us begin the process of taking her home.Since Beth is a Registered Nurse she is just as qualified as any of Katie’s current care givers. Beth has experience with Naso-gastric tubes as well. We are hoping that Katie’s doctor will consider letting us take some informal instruction on how to care for Katie with the n-g tube, and even perhaps let us keep Katie for a day or two in the “Care by Parent Room.” This is the same room we stayed in for the first four or five days when it wasn’t clear if Katie would make it. We would be much happier staying in this room again for the reason being discussed. While in this room, we could be periodically observed in our care of Katie, as well as being able to report the volume of her milk intake. We are supremely confident that if there are no other underlying issues which would necessitate her remaining at Duke that we could provide the nearly the same level of care at home.We do hope that the good doctor will consider this request, but are also entirely ready for his hearty refusal. While are extremely ready to take her home, but we are still practicing patience and only want to take her IF she is ready. This will also be made clear during our meeting in the morning. Even if this request is honored it could still be at least a week before we would expect to get home, so don’t get too excited.One issue that may prevent our success with this route was the discovery of a peculiar lump about the size of a small egg (picture a boiled egg halved the long way, flat side down) which appears just below the scar from her surgery. This lump is only visible when she it crying or really tense. At first we thought that it was a hernia and some bowel had poked through below the incision site and was just below the skin, but as soon as she settles down it disappears. Once attention of this was brought to the nurse, she called the nurse practitioner who called the doctor. It was concluded that this is probably a weak spot in her abdominal muscles just below the incision site. The regular surgeon is to check it out on Monday, as it was not deemed to be an emergency.Here we go hoping again that this lump is just weakened muscle that will correct itself, rather than being a condition that requires another operation to repair. What does the Bible say about hope? Psalms 71:14 says: “But I will hope continually, and will yet praise thee more and more.” We praise your name oh God for your blessings; We praise your name for these hopes! No matter what Lord, let your will be done, not ours!On another note, we received the attachment to this e-mail from our good friends Ashley and Jessica Singletary of the Parker Reese Foundation. It is a fundraiser to help sponsor Parker’s house where we have been living. Even though this is our last night here, this has truly been a home away from home and I am going to miss it. This fundraiser is simply a t-shirt sale. Each t-shirt represents the cost to run Parker’s house for one day. The goal is to sell 365 shirts, keeping this wonderful and God sent refuge running in the black for one more year! Please don’t feel pressured to order one. We just wanted to make you aware of this opportunity!