New Cardiologist and Mommy Meltdown

Update from Thursday, May 28 - May 31, 2009 - We met with Elle's outpatient cardiologist on Thursday. His name is Dr. Wolfe and thankfully he is at the TCH on 1960 - so I didn't have to drive downtown. It still took me 2 hours to get everything together for our office visit though! Both Lee and I are extremely pleased with our choice in cardiologist - he seems like an extremely nice man and unlike our pediatrician visit - he knew and had reviewed Elle's history and asked us about it. He said we were famous and he had been receiving phone calls about our little princess! That was so good to hear - and it was the first thing he told us as he entered the room. Elle's oxygen saturation levels were great and her chest x-ray looked fabulous too. The office visit lasted only about 20 minutes - but Dr. Wolfe sat and talked with us for over an hour. We will be seeing Dr. Wolfe monthly until it comes time for Elle's major heart repair. Right now, it looks like the major repair will be around September but we won't know for sure for several months. I am still recovering from a "mommy meltdown." It started Tuesday night when I tried to breast feed Elle. She had done great at the 6:30pm feeding and had latched on for about 5 minutes. That's huge for Elle! I thought for sure the 9:30pm feeding would go as well as the earlier one had. Nope! Elle screamed for 10 minutes solid and when I say screamed - I mean mouth wide open but no sound coming out - turning purple kind of screaming. Of course I got frustrated and ended up crying myself to sleep that night. Wednesday wasn't much better. Each feeding, I usually start off about 30 minutes early and we start with trying to breast feed and if that doesn't work - we work with the bottle. Each time I tried to breast feed her, the screaming would start again - it was like I was hurting her. By the time Lee got home Wednesday night I was ready to cry and I eventually did lose it. I hate Elle's stupid feeding tube and I hate the fact that she won't take a bottle or breast feed. Never in a million years would I have thought that I would be using a feeding tube and machine to feed my baby. Lee did his best to calm me down - which I greatly needed. It's taken me a few days to recover from the last mommy meltdown. Every time she starts screaming when we are working on feeding, I just get so upset and frustrated. Frustrated that she won't take the whole bottle or let me feed her and frustrated that we have to use a machine to feed her. This morning I was sitting in our backyard on the patio and Lee has turned on KSBJ (the Christian radio station) and I was singing Blessed Be His Name to Elle. It was just the two of us enjoying some mommy/daughter time. The whole time I was singing to her I was making a list of the pros and cons of her feeding tube. The pros far outweigh the cons - and I am now coming to terms with the tube. PROS 1. We don't have to wake her up to feed her - just hook her up to the machine and the feeding begins 2. I know exactly how much I am feeding her 3. Administering her meds is easy and I know that they are going straight to her stomach 4. She is still getting breast milk and is getting her nourishment 5. We can travel with the machine and I can start the pump and drive if I needed to 6. It's not hurting her 7. When Elle has her major repair of her heart done in a few months - the feeding tube will already be in place so it will be one less thing to worry about 8. If anyone ever needs help operating a Kangaroo pump or cleaning a g-tube - I know how to do it CONS 1. It's a machine 2. I feel like I am missing out on a big part of being a mom 3. The tube hanging out the bottom of her dresses doesn't exactly go with her outfits I decided to go to church this morning and Lee spent the morning with our little princess. Before I left, he came in and told me that he thinks we are great parents. He knows I have been struggling with the tube lately and hearing his confidence helps me to start thinking clearly again. He said that in our situation, lesser people would have given up - but we haven't. We are good parents (at least the best that we can be)! We have been there everyday for our little lady and we have loved her more in the last 10 weeks than some people feel in a lifetime. On my way home from church an announcer on the radio said something about being normal and it clicked with me that feeding tubes, feeding machines, cardiologists, audiologist, genetics, ents, surgeons, anesthesiologists, hospitals, doctors, nurses - those are our normal. They might not be every one's normal - but they are ours. Like we have said in the past - it is what it is. The great news is that we go to the doctor on June 4 to have the long tube that is currently coming out of her stomach taken out and it will be replaced by a button. I have no idea what it is going to look like - but it can't be worse than a 10 inch tube coming out of her stomach. As much as I hate the tube - we are still working with the bottle and trying to breast feed - although she screams during the breast feeding - she is doing better with the bottle. She is now averaging 20cc instead of 10cc which is awesome! I continue to pray that Elle gets stronger with each passing day - feeding tube and all. I pray for peace and strength for Lee and myself. I pray for a quiet mind for me that I might look for the good in all the situations we face and never the bad. I have a ton of pictures to post - but I first have to figure out how to download them off my phone. Once I can figure out how to do that - the picture onslaught will begin! Elle has changed so much in the last week - she changes everyday and I am already jealous of her looong eyelashes - she is such a pretty little girl (but I'm not bias or anything)!