"I get on my knees/ There I am before the love that changes me/ see I don't know how but there's power/ when I get on my knees"

Sunday 4pm
I’m trying to type the world’s fastest blog before I am off to the hospital again. Thursday, after I was discharged we headed off to Children’s for a quick visit with Charlotte. She was doing well though still a bit groggy. At that nights visitation we found out that she might be having the shunt surgery the next morning. I knew all along that this would most likely be the case, but it still was hard. She already had a long incision down her back and bruising from multiple IVs. It just seemed too much to ask this little thing to endure another major surgery. I was a mess most of the night trying to grapple with the reality of another surgery. It is hard to hand your child over to God’s full care even though you know His love for them is infinite. I prayed and prayed for strength and courage for myself and for protection for Charlotte. I know so many of you were praying as well, and I thank you from the bottom of my heart.

Friday morning we found out that the shunt would indeed take place, and we headed off to the hospital at 9am. Ben warned me that Charlotte would be upset because she had not been fed since midnight due to surgery. It was so hard to see her in such distress and be totally helpless, but I knew in my heart that she was in the care of the Great Physician. We followed her down to surgery and then began the waiting process. The surgery went faster than the first, and eventually Dr. Wellens (our wonderful surgeon) came to tell us that she had done well. When I heard the news I broke down once again in relief. I wondered and have continued to wonder how I can ever thank God enough for His mercy. It is endless. Friday night I was actually able to try to feed her (holding her on her side). It was a bit overwhelming for both of us because we were both new to the game but we had some success.

Saturday was a bit better in terms of feeding, but I was utterly exhausted by the end of the night. I know so many of you have probably wondered why I haven’t called or written a blog sooner, but the days seem to be jam packed. My day usually goes from pumping early, then to the hospital till 2pm, then lunch, then pumping, then maybe a 30min break maybe not, then back to the hospital till 10pm. I don’t want to miss a second with my girl. I still choke up every time I see her at the beginning of a visit and when I have to leave. It takes my mom and Ben holding me back not to attend the visitation from 12am till 6am. But they are right; I have to take care of myself so I can fully take care of her.

Speaking of care, I have learned a bit more about how to provide for her these last two days. She is latching on and feeding much better and I’ve figured out more about reading her stats and knowing which leads go where. I’ve also been trying to change her diaper as much as possible because this is a major process. She has to have a fair amount of care in this area because the incision is so close to her bottom. The problem we are facing right now is a bad reaction to the “mud flap” (a plastic flap used to keep stool off her incision). She is developing a bad rash which a nurse warned us can become quite irritated and even bleed. Compared to everything else she has been through I guess it doesn’t seem like much, but I feel like she has already gone through plenty. Please pray that this issue would resolve itself. The other part of her care that I have not learned yet is the In and Out Catheterization. We are hoping that she doesn’t have to have this at home, but it is a definite possibility. Good news is that Charlotte has not had to have them as frequently as of late.

We are hoping that if things continue to go well we might be able to start the rooming in process. This just means we stay at the hospital a night and they teach and train us on Charlotte’s care. Ben and I are both so excited to bring her home though of course we want her to be fully ready. We can’t wait to show her off. However, she has had a rough beginning and we ask that those of you who plan of visiting please refrain for awhile if you have any type of cold or contagious illness. We are also asking that those of you who visit please apply antibacterial lotion before touching or holding her. We will provide it as that is all we seemed to be putting on our hands these days. We are trying to take as many precautions as possible since she is still in a fragile state.

I want to thank you all for your compassion, support, prayers, friendship, and the many things you have done for Ben and me. God has truly blessed us. I don’t know how to thank you properly or enough but know that I appreciate everything from the bottom of my heart, as does Ben.

Sunday 10:45pm
Just got back from the hospital. I was able to feed her around 5pm which was great though she was fussy. Beth, my sister-in-law was able to come which was wonderful. She was able to see Charlotte in a more alert setting. Unfortunately, Beth was not able to hold her because now the only time she can be held is during a feeding. This is so that she can be on her stomach with no diaper covering her rash to allow it to heal faster.

After feeding and changing her I headed back to my Grandmother’s for a quick supper. I wanted to get back to the hospital fairly quickly because our nurse was going to let me bath her. The bath was good for me to learn to do but very miserable for Charlotte who bawled the whole time. After the bath I was able to feed her again. She seemed to eat well though she stayed fussy the entire time. And when we left she was still crying. It was absolutely miserable to leave with her still crying; it broke my heart. We think it is due to the fact that she has to be back on her stomach and the rash on her bottom is causing her pain. However, I fear that I didn’t feed her well enough, or that she is getting sick, or maybe I’m just not doing well at mothering. It is so hard to leave and not know why your baby is upset and not be able to sooth them. I am hoping that tomorrow morning she is doing better and that we get a positive report from all the doctors. As far as coping tonight, I’m going to try and trust God to take care of her like He has done so lovingly thus far. “Be anxious for nothing”