April 11, 2012
I hate to set the tone for the rest of this post, but I can honestly say without a doubt that this day has been the very worst out of all of them. I can only hope and pray that this is as worst as it gets. If it's not, then God needs to prepare my heart for more, because I have about reached a point.
When I got there for her 9:00 am feeding, she was a little awake and alert, which is a big deal for her. Her new "norm" is taking about 15 ml/cc in about 15 minutes. This is still so frustrating to me. That's what the nurse told me did for her 3:00 am feeding. Luckily, her nurse on duty was my favorite so far. I feel like she has really taken an interest in Landree and myself. She would literally sit down with me if I was crying and just talk. So, when I walked in to see her again, it made me feel good.
I hadn't been holding her but 5-10 minutes when a lady from the lab came in to draw blood for the genetic testing. I put Landree down, left the room, and left her in the care of her nurse, because I was not going to stick around and watch that. Especially because Landree's arms are so frail and she barely has any fat. I waited around the corner and could hear her cry - torture on me. Another nurse saw me and asked if she could help, I just told her I was waiting on them to draw her blood and didn't want to be in there. She said she'd go check on it. She never came back. That was less than encouraging. While I was standing there I told myself, "No more!" Let's stop with all this nonsense and not poke and prod at her anymore. Let's wait for the results from the very first genetic test to come back and then we can cross this other bridge when we get there.
The nurse finally came back and told me they weren't able to draw the blood. That's when I burst into tears and asked her if that could be it. Do we have to continue on? Why do we need to keep doing this to her? I could see that look in her face. That same look that I get when a parent doesn't want to hear what I'm telling them. They aren't thinking their logic through. That irritated me. I went back in the room, and held tight to the fact that I didn't want anymore testing done until we received the results from the first test. The nurse told me she would talk to the Neonatologist about it. This was the same Neonatologist that I had spoke with yesterday. When I got back in the room, Landree was wide awake and seemed perfectly fine. I scooped her up and held her for a bit. I love it when she's awake.
I called Austin and told him that he needed to get up to the hospital ASAP. My hormones were taking over and I was afraid I was going to kill a nurse or unleash the post-partum hormone monster. I needed him to talk me through it and if we were really going with the decision to opt out of more testing, I needed him here for that, too. Austin dropped AB off at Andrea's and headed up to the hospital. Perfect timing, too, because as soon as he got there, the Neonatologist walks in not two minutes later. She discussed her spitting up issues and how frequent they were and the color. She suggested some things she wanted to try out for that. She also mentioned how she wasn't eating where they wanted her to and she felt she really needed to get to the bottom of that issue. Then, she started examining her and she showed me how Landree had poor muscle tone in her leg. She pushed her leg back and Landree sort of just went limp. She didn't fight back to push back when the doctor pushed her leg in. She explained how she sleeps with her mouth open instead of closed, that isn't "normal" either. There she goes with that word, again - "normal." It's either been used in a good way when talking about Landree or a bad way. This time was in a bad way. She started saying it more and more. "This is not normal." "That is not normal." I felt my head start to spin, like I could pass out from what she was saying to me. Then she used the words, "There is something wrong with your baby." You could've put a knife through my heart at that exact moment. I get it now. I totally get it. When I have to deliver unsettling news to parents, and they don't want to listen or they don't pursue my advice, and I get so frustrated. I get it. No parent wants to hear or confront the fact that "There is something wrong with your baby." No parent. She went on to tell me that she has no idea what it is. In fact she may leave the NICU and be home before we ever find out what it is, but there is something. My heart just broke into millions of pieces. She said that she wanted to go on and continue the testing that the geneticist wanted to do. It was at that point I couldn't argue. I couldn't be in denial about the whole thing. It had to be done. If we are going to get Landree what she needs, it has to be done.
Landree had one of her spitting up episodes. It was a very yellow-ish green color. This alarmed the doctor and she ordered an upper GI for Landree and wanted it done ASAP. She thought there could be something wrong with her intestines for it to be that color.
After she left, I don't think I'll ever forget the look on Austin's face. Rarely ever does he have the look of defeat on his face. I'm not quite sure if this was defeat, but it was close. We heard it from the doctor, there is something wrong with her. Her words cut like a knife. After she left, we were both quiet for a long time. What do you say? Shortly after, they came down to get her and take her to radiology to do her x-ray. Her nurse told me I could go, but I told her, emotionally, I didn't think I could handle it. So, they wheeled my baby down for her first x-ray, at a week and one day old. Austin stood up and grabbed my hand and told me we needed to get out of there for a while. We left to go eat lunch.
At lunch we discussed all kinds of different scenarios that might take place in our future. We have no idea what to expect for Landree. If she does have something, is it on the mild side or the severe side of the spectrum? If she doesn't, then what is causing these issues? Could it still be she just wasn't ready to come out, and she's still tired? Probably not. She was making more progress the first few days of her life than she is now. That's a hard pill to swallow.
We went back to the hospital to give her her bottle. I'm starting to dread feedings. There hasn't been anything to look forward to. She has leveled out at 15 ml/cc - that's all she wants. When we got back, the OT was there feeding her. I love the OT. She started working with Landree when she was two days old and has provided a lot of feedback. She was seeing the same things everyone else was. Austin and I stayed for a couple more hours and headed back to get AB. I don't think I've ever been so emotionally drained. It made me exhausted. Physically, I was fine. I bounced back from this delivery in no time. I didn't feel any affects of giving birth only a week prior. Thank you, God, for that.
Austin and I came home, loved on AB, ate a WONDERFUL meal prepared by our sweet friend Kelly from church. Nana came over for a little bit to give us a hug and to hear about Landree. She stayed with AB while we went back up to the hospital for her 9:00 pm feeding. We got there and the same sweet night nurse was on call that was from the night before. I changed Landree's diaper, took her temp and got her ready to eat. When I started feeding her she started having a couple of Brady's (where their heart rate drops). She would sound like she was aspirating and then Brady. This experience is so scary and very discouraging. She spit up, and again, it was that yellow color. The charge nurse instructed the doctor to be called to come see what she thought. I wish she hadn't. The night-time Neonatologist came around the corner, with her arms crossed, stopped in the doorway and just stared at us. Maybe someone woke her up? I don't know, but what a...I'll be nice...what a grouch. She didn't introduce herself to us, didn't look at us, either. I was floored. She said ordered what was called an hour feeding. This is where they would feed her through the tube over the span of an hour to where she wasn't getting so much at once. Maybe this would help with the spit up. The charge nurse tried to feed her. The charge nurse was talking out loud and throwing some ideas around, and at one point mentioned, maybe she has something "wrong with her brain." That's when I stood up (already a basket case), looked at Austin and said, "What is this? A really bad freaking nightmare?!" and stormed out of the room. First the aspirating and the brady's, then the really grouchy nurse and now there's something wrong with my baby's brain? What is going on here?!?!?!? I think I was having a mini- nervous breakdown. Austin came out and told me that I was here too much, and tomorrow I wasn't going to be. I tried to pull it together and head back in the room. My head was spinning in disbelief of everything that was going on. I couldn't believe. Oh, could somebody please just wake me up from this nightmare?!?
I came back in the room and the nurse was talking to Austin about how she is a walking miracle and God healed her three times. She put her hands on Landree and said, only God can do this for her. I sat there sobbing, listening, but having little faith it can or would take place. We've already experienced so many let downs. She told Austin to take my hand and she was going to pray. She did. She prayed over Landree, she prayed over healing and divine intervention and she prayed for Austin and I. I felt it was God that had put her there just for that to happen.
Something she said to me was, God will heal this baby - He is able; but it won't happen if you don't have faith. Oh, that word. Something that I have completely lost the meaning of over the last four days. Faith. I feel like I have none. It is a very defeated feeling. I realize that I am allowing Satan to take over the situation by feeling this way. I told myself I was going to need to work on this and just consume myself in prayer. I think I've been so much on the go, that I haven't done that.
After she prayed for us, the rest of the night went better. I felt better about things...I still just wanted answers. Our sweet nurse came back and talked to us a while and took our picture as a family. I treasure it. Of course, there is one little person missing from the picture...but someday soon it will be the four of us. I'm just clinging to the fact that Landree belongs to God and He is able to heal and able to change the situation. I have to cover myself in prayer and cover Landree in prayer. And as my best friend says, "speak good things over her."
Thank you, Lord, for this amazing gift you have given us. Thank you for these trials. I know that we are learning from this and you will use this experience for good and your Glory.










