We just got back into town from seeing Dr. Throat. She felt Lillian's stoma indeed looked smaller. I notice a little difference, but not major. She is now scheduled for another broch on June 8, tentatively, if the bronch looks good, they will close the stoma and she will stay overnight to make sure she can tolerate the closure. She is also going to re-examine her ear tubes, she said one looks crooked, so they will replace it if need be.
Her appt time was at 11 and we didn't go back to a room until almost one I believe. It was a quick visit and the office was very busy. I was able to chat with a Mom in the waiting room who had a little guy, about four years old. I could tell he was a special needs child and we soon struck up a conversation. My heart broke for her as she told her story of her son. He had been a healthy little boy and just collapsed in the back yard while playing last October. She told me tearfully, he had a heart attack and some brain injury, but as of yet, it is a medical mystery as to why it occurred. She shared with me, that dr. throat had saved his life and rescued him from getting a trach. He was such a sweet, precious boy and shared some smiles with Miss Lillian. Lillian was very interested when this Mom gave her baby some medicine through his G-tube. If I could read her mind, I'll bet she was thinking, 'oh, so I'm not the only one'. Upon being called back into the treatment room, I told this Mom that I would keep their family in my prayers.
I started to have a little bit of anxt on the drive home while comtemplating the coming bronch and just stopped my brain and focused on the Lord. Whatever happens, happens. It is in God's hands and I'm keeping that focus.
Friday, May 21, 2010
As I go back and re-read some of the posts on Lillian I can vividly remember those times. Actually the last few weeks with all the news of the airway it was very much like being back in the NICU with so much unexpected information. Feeling so helpless and in disbelief that all this is really happening. I remember in the waiting room, when Dr. Throat came out and said, "her airway is much to narrow" I literally felt like I was transported back to those days. Disbelief and helpless. Thinking that this would never end for my sweet girl. Speechless..and in those moments knowing there is a room full of people, yet feeling very alone. Ironically, noone spoke. There were three people present around me and noone said a word. I think they were just silently praying. Knowing there was nothing that could be said...just having their presence surround me was comfort enough. It is difficult to thank someone for such times. There really are no words to express how I felt. Just a hug and tears, to share my pain. Honestly, I don't dwell on the hard times. How could I? I would never be able to take joy in the good ones. It does, though, remind me that God is ever present. He sends the right people and His comfort.
When Lillian was born, most nights I spent crying and praying into my pillow. One particular night, I was given a sleeping room on the NICU floor. Funny looking back now, it seemed like a little prison room, toilet, sink, bed. Didn't matter, I was so grateful to not be sleeping in the waiting room floor, it didn't matter. I think this was probably the second week into the journey...I don't know for sure, it was difficult to keep up with the days. I lay there in one of those uncontrollable sobbing states. Praying. Praying for it to all be me or for it to not be happening at all. Praying for God's will and the ability to accept whatever it might be. Just so devastated. Missing Matt and the girls, feeling so torn between my family and dealing with it seemingly alone. I had the lights on, and in a split second I felt as though someone had curled up beside me in the bed and placed an arm around my waist spooning me. It only lasted one or two seconds, but it was enough to snap me out of the state I was in and startle me. Of course, my eyes flew open and had the light not been on, I would have sworn someone was in the bed with me. Friends, I took me about two seconds later to realize the Holy Spirit came to comfort me. Little, insignificant me. I have cold chills when I recall it. I was able to stop crying and fall asleep. I know, and will never be convinced otherwise, that God is always there. In later days, much later days, I shared this story with my friend, Michelle and she began to cry. When I asked her why she was crying, she told me I didn't know how many times she prayed for the Lord to wrap His arms around me.
There are moments when I long for that 'touch' again, but just remembering it reminds me that He is there. Always there.
I'm so thankful for His presence and those people He has placed around me to bring His comfort to me. I'm thankful to see His goodness, everyday, trials and all in this precious life.
Wednesday, May 19, 2010
It has been a rough couple weeks for Lillian thanks to unending ear infections...but I dare say it...I think she is getting better. I'm not used to a whiny girl. In general she has to be REALLY really really sick to be grumpy, but I think the combo of ear infections and allergies had just about had their way with her. She is finally getting a peaceful nights sleep, little to no coughing. I've been able to stop the benadryl. You wouldn't think that would be such a great thing, but in my eyes it is. I hate to medicate her. I'm not thrilled with medicating, but at times it is necessary. We will revist Dr Throat again next week. From there we will schedule another bronch and see what happens. Oddly enough I think her stoma is looking smaller or different or something. It is not as sunken in as it was. The procedure changed something. I wait cautiously optimistic and praying for God's will in whatever happens next.