I want to make sure I mention that up until the end of my last post, we were getting comments from her doctor and nurses about how strong Eliyanah is for a baby with Trisomy 21. They were following the protocol they would follow for a baby with low muscle tone, but she was quickly proving to them that she was anything but weak. Monday night was the last day her first doctor would be there. He was going to be off for the rest of the week and the regular head PICU doctor was going to be taking over. As Monday afternoon and evening wore on, she started showing signs of responding to the albuterol and CPT treatments. She was coughing more, breathing a little better, and beginning to progress in the right direction. The voices of the nurses and respiratory therapists started to sound a little less serious. They started to smile a bit more. When the doctor was getting ready to leave, he stopped me outside the room with a smile and said, "I'm really happy with her progress." I will never forget those words! What a relief! She was not completely out of the woods, but her body was finally beginning to clear out the fluid from her lungs and she was turning the corner a bit. I felt hope and for the first time since we had gotten there, I felt like I could take a deep breath.
The doctor really did try to work with us. He knew how badly I wanted to at least start getting milk back into her through the feeding tube. She had been crying for at least a solid hour that afternoon because she was so hungry. I can't tell you how many people asked us if she takes a pacifier. They tried giving her one and it just made her even more angry! I did feel that he really did listen and try to accommodate, or at the very least, explain his thought process to us. He made the call to switch her to C-Pap to see how she would do, and if all went well, she would be able to start NG feeds the next day. It was not as fast as I wanted it to be, but throughout this whole experience, I knew I just needed to accept that this was the path we were on and not fight for my own way. I also wanted her on the quickest possible trajectory towards going home, and I didn't see how showing impatience and frustration would help that at all. So we took it as a victory, she was heading towards at least having a full belly again!
We had the same nurses for the first three nights. One of them is pregnant with a little girl and due in March. She seemed to connect with Eliyanah better than any other nurse there. When I could not calm her down, she held her for me and helped her settle. We had a great conversation and she told me how she just does not seem like a baby with Down Syndrome at all. She's so strong, it really just amazed and impressed everyone! It helped to know she was being cared for by a nurse who thought she was so precious. That night, she slept really well. I think Derrick was even able to put her down and lay down. This time, they had a courtesy room for us that was way down the hall from her. I just couldn't bear to sleep that far away, so I ended up in the recliner in her room for most of the night. At some point, I did finally switch with Derrick and get a few hours of sleep. During that time, Eliyanah had woken up and finally peed (they were monitoring this closely because they still were not giving her much for fluids). It was so much that it leaked through and she needed to have her IV tube retaped (they had splinted her foot and taped it halfway up her leg just to make sure she didn't pull it out since it was so hard to get it in). This was quite an ordeal, but I guess I never actually heard any of this, because I was sleeping so far away.
Tuesday morning rounds came, and with them, our new doctor. I was nervous to meet her, because I had been told she's even more cautious than our previous doctor had been, and I just wanted to get milk into my baby. When she came in, I was so encouraged. She was immediately impressed with Eliyanah's muscle tone and how well she was responding to treatment. It was time to start tube feedings! Finally, my baby wasn't hungry anymore. She couldn't have the comfort she wanted, but it was a relief to know she was moving yet another step in the right direction. As the day went on Tuesday, she started to show signs of healing. Less fluid in her lungs, more productive coughing, and just a little bit more like herself. Before the end of the day, we were told that they would be turning down the Fi02 gradually from 50% to 40%, and if she could get to 40% by morning, they would switch her to high flow....which is just the regular oxygen! They also moved us next door, to a room that was not technically the PICU, because they planned to change her status the next day. Our baby was getting better, and now we could all stay in the same room!
I remember feeling a lot of peace Tuesday night as Derrick laid her down in the crib and she slept peacefully. We expected a rather easy night. she was doing better, getting milk, and resting comfortably. We felt like we could finally relax a bit. But God had one more lesson for me and one more test of my faith and resolve.
Sometime around 1 am, I woke up to the nurses coming in to do a tube feeding. They didn't realize I was awake, but I was listening as they checked the tube to make sure it was still placed properly. For those of you who don't know, this means they would squeeze a tiny bit of air through the tube and listen to her stomach with a stethoscope to make sure they could hear the air. I had watched them do this several times, but this time I heard, "I don't hear it." Uh-oh. I hoped and prayed that it was just a mistake. They tried again. Nothing. They called another nurse in for a 3rd ear. She didn't hear it either. By this time I was standing up and asking what was going on. The one who seemed especially fond of Ely tried to sound confident, but she was upset. She felt terrible that she thought she had woken us up to 3 nurses standing over the crib. She said, "I'm so sorry, but we can't do her feeding right now. If the tube is in the wrong place, it would be dangerous. The doctor is already on her way in to see another patient, so we will ask her what she wants us to do. She may want us to replace the tube, which means retaping everything and doing another chest xray to check for placement." My heart sank. I didn't think I could bear watching her go through that again. It was bad enough witnessing all of that when we arrived! I walked out a few minutes later to discuss it with her some more, and she had tears in her eyes. She was so frustrated. It didn't make the problem go away, but it did ease my sadness to know that she was sharing the same feelings. She didn't want to wake her up and do a whole bunch more invasive measures anymore than we wanted her to. I chatted with them some more, and asked if they could ask the doctor if we could just take the feeding tube out since we were so close to the oxygen weaning goal, and so close to me just feeding her again. I was hoping maybe she'd just speed up the process a bit so we didn't have to put her through all this again. Keep in mind, my sweet girl was sleeping away so peacefully, completely unaware that they were about to put her through so much stress yet again. The nurses were supportive, but were at the mercy of whatever the doctor decided. I went back to the room and just sat with Derrick and all I could think of was Israel and the Red Sea. There was an enemy pursuing them and they were surrounded. Then God opened up a way of escape. I prayed hard over her, that God would give a way of escape and that she wouldn't need to go through this again. But we both just asked God to do whatever is best for her, not our will, but His be done. I truly felt His peace wash over me. No matter what happened, she would be ok and it would be for the best. We laid down and fell asleep. I don't know how long we were sleeping for, but I woke to the nurse gently shaking me and telling me how sorry she was. The doctor had ordered the NG tube to be replaced. They had to get her up and do it right at that moment. I was shattered, but rather than stay in the room knowing I could do nothing to make it easier, we decided to take a walk down to the lobby and have a few moments alone. I couldn't bear to hear her screaming again. As we walked down the stairs, I asked Derrick if she would be traumatized by this. He reminded me that kids are so resilient. We might be a bit traumatized as her parents, but she would not be in the long term. I knew he was right. A dear friend who taught me so much about brain development told me that kids' brains actually grow more when they experience hardship. Not that we want them to struggle, in fact I think sometimes I want to wrap my kids in blankets and protect them from all potential harm! But God has created us to be able to power through adversity and to be stronger and better because of it. So while it broke my heart, I knew that she would be ok. In the Red Sea scenario, the only way out was through. We had to walk through, and so did she.
When we got to the lobby, the most beautiful thing awaited us. Worship music was playing over the sound system. Just gentle, relaxing, praises to our great God. It was just us and the night security. We sat on a couch and it was just a really sweet moment of rest. Resting in our Savior, together, as one unit. Both so sad, but also both knowing that God loves Eliyanah even more than we ever could. That He sees our hurt and also was making her well. I was heartbroken, and also felt like I was being ministered to in that moment. After about 20 minutes, we went back upstairs. They were all done and Eliyanah was calm. In fact, one of the nurses was pulling her up to a sitting position and remarked, "You are just the strongest baby in the world!" She got another feeding right away and went quickly back to sleep. She still made it to the 40% oxygen goal by morning. There were no real setbacks, and all was well. We learned that the NG tube was in the right place, but completely clogged with mucus. I also realized when she woke up later that morning, that milk was exactly what she needed. It was good for them to continue with tube feedings throughout the night. For those of you who may not know, mother's milk is an incredible miracle. Not only does it give her all the nutrients she needs, along with fat, carbs, protein, etc, but it also has this incredible ability to adapt based on her needs. When I kiss her, her skin tells my brain what it needs, and my body will make exactly the right composition, including the exact antibodies she needs to fight illness. I was pushing hard for her to get milk, not just because she was hungry, but because I knew it would literally speed up the healing process. And boy did it ever! When we saw her in the daylight, her normal color was back. She was pink again! The fluid in her face had gone down and she looked so much more comfortable and happy. God did just what she needed. I was so glad that we had trusted Him. I have never once regretted trusting in Him, and I am sure I never will!
Part 3 gets even better. Stay tuned!
No comments:
Post a Comment