I do apologize for not updating as often, I really appreciate everyone praying and staying updated. I know it's important to get updates so you know how to pray. I'm trying to get one up each day, but some days find that I just don't have the time or energy. Hopefully we'll hear soon about our insurance coverage. If we have a night nurse, I'll have the energy to update!!
Monday morning was a bit crazy, as I expected it would be. We changed Hope's schedule to feed her at 7 and give her meds then as well. It makes it easier for us and means that her bloodwork would be due at 11 and not 12 noon. I was up in the 6's prepping feeds and drawing meds. Apparently, I should have been up in the 5's! My hair was very greasy, but there was simply no time for a shower. I don't even think I remembered to brush my teeth. I won't be making any new friends at the hospital! I started Hope's feeds and gave her meds right at 7. The feed ran slowly and wasn't finished until almost 8, but that's when my appointment was due to start. After the feed was done, I had some serious business to take care of in her diaper - it also involved a new outfit and blankets! I finally got her into her carseat, collected everything I needed and was almost out the door when the hospital called. They wanted to change my appointment with cardiology to 11am, but that wouldn't work as I now had Hope on a schedule that required her blood work to be taken at 11am.
We were finally out of the house and on our way. I was half way down the driveway when Hope started to throw up. I backed up the driveway and went into the house for new blankets and to bring an extra outfit. We arrived at the hospital at 8:35. I usually hate being late but felt that this would send a clear message to the cardiology department - they would never book Hope in for another 8 am appointment! They started by weighing Hope, and she was 7 pounds and 9 ounces and 21 inches long. I gave our main nurse the rundown of our weekend with the feeding tube. They were furious when I told them that the ER had instructed us to push Hope's meds and feeds, even if we weren't able to check the placement of her feeding tube. I knew that was terrible advice - unfortunately the same ER doc was on all weekend and it wouldn't have helped to return on Sunday.
The Dietician came to meet with me next, she said that Hope is gaining an average of 18g a day. They were hoping to see at least 25g a day and have upped the volume she receives at each feed to try and resolve this. The social worker came in next and spoke to me about how we were coping. We're trying to apply for a government program that will help us cover parking costs, our trips to Edmonton and other costs associated with Hope's condition. She agreed that we should apply, but let me know that most heart babies are denied coverage because they don't have a developmental or physical handicapped according to the criteria. Please pray that we'll be accepted to the program, it would be a huge blessing.
Our cardiologist arrived next, he was so pleased with Hope and how she's doing. He said that she looks better than he expected her to and was happy with her progress. I spoke with him about Hope's exposure to others. He was very encouraging and let me know that they tell people not to go anywhere highly populated, but that relates more to babies born in the fall or winter. Now that cold and flu season is over, they are comfortable with us going out, as long as it's not peak time and not too crowded or busy. Even our church is less crowded in the summer, I never thought that would turn out to help me! We still need to be very careful, but at least I can get out every once in a while with the girls.
After our appointment in cardiology was finished, we were taken to the feeding clinic and met with the NG specialist. Thankfully, Hope's tube was giving them trouble, and they were able to see what we were dealing with at home. They inserted a new, larger tube and ran into the same problem. They were totally stumped and said that they had never seen this happen before. They didn't really have a solution or any answers for me. They made some suggestions that they hope will help, but each time we run into problems with the tube, we have to go in and see them. Please pray that our problems with the feeding tube will end. I really don't want to go to the hospital everyday.
By the time we finished, it was 10:30 and time to head to the lab for blood work. I have never seen so many children waiting to have blood taken, it was packed! Thankfully, our blood work is time sensitive, they had to take us at 11 anyway. I am always sure to let them know that Hope's veins are VERY small and it is really difficult to take her blood. I'm pretty sure they think I'm exaggerating and never send in a senior person, even though I ask. Once again it took 3 tries before they were able to get blood from Hope, and they had to get a more senior person to do it. It's so frustrating as a mother to watch your child scream and not be able to do anything about it.
I often think of our friends, Lincoln's family, throughout the day and feel such a heaviness to pray for them. Please continue to pray for them as they have a funeral this week and bury their son. I cannot even imagine the pain they are feeling.
As a family, we are really tired all the time and find the lack of sleep catching up with us. Last night, a nurse friend came over to do the 10 pm and 1 am feeds. Shawn and I both slept very well and felt a lot better as we got up to start the day today. We are praying we get our coverage and have a night nurse more regularly.