Tuesday, December 14, 2010

I'm sorry I haven't posted in a few days. There has been a lot going on and it's hard to sort it all out so that it makes sense. I'll try.

My baby girl has been off of feeds and on antibiotics again. No one knows what's going on with her. They can't agree on anything. (In fact, one doctor expressed a need for the doctors to be civil to each other.) I had no idea my girl had sparked such fighting in the department. I sat down on Saturday and spoke with one of the doctors for about an hour. It was a really depressing conversation. We were down to some truly horrendous options. First, some of the doctors want her to be scoped. Some of the other doctors think this could be disastrous and perforate her bowel. Other doctors want to do surgery. They want to open her up and go looking for the problem and remove it. I think this sounds horrible. Really, they've been in there twice already. Third time is a charm, huh? This would mean another couple months probably. Not to mention, we have no idea how much they'd want to remove. They could wind up removing so much bowel that she would have to be on IV nutrition permanently. Isn't that lovely? The third option is sending her to Seattle. It's already hard enough to live this far away from the rest of the family. Seattle? I might get to see them once a month if we can get over the pass. We also discussed the possibility of her having an ostomy bag her whole life or going for a bowel transplant. Did you even know they could do such a thing? And the bottom line....barring an act of God, this child was not going home for Christmas so I should hang that up.

I went out in the hall and called Mike sobbing. He was upset too, but felt like we could do the Seattle thing. I told him to have fun because I wasn't going. I didn't want to live away from my family any more.

I calmed down and went back in to be with Hope. I had a wonderful nurse that day who closed the door to my room and put up a "Quiet" sign so that I could have some peace. I sat in the room holding Hope behind my curtain and she was rooting around on me wanting to nurse. It hurt so bad to not feed her! I called Mike on my cell and told him,"I want to feed this baby." He told me no. Although he thought it was a good idea, he wanted me to discuss it with the doctor before I did anything. "Then I'm going home, because I can't sit her and do nothing anymore." Before leaving I had a conversation with my nurse. "What can I do if I disagree with what the doctors are doing?" She told me that I was the parent and I found out that I have a lot more power than I thought. She did not tell me what to do, but she wasn't discouraging me in my line of thinking.

I went home and prayed, and I know Mike was praying too. I basically said, "Lord, I've been crying out for you to speak to me, and you haven't spoken. So this is what I want to do. I want to feed my baby. If I should not do this, please tell me. At least make me wake up sick or keep my car from starting so that I can't go in." God did not speak, I was not sick, and my car started. So I went in to the hospital.

The doctor came by to do rounds. He sat down and said, "So here's the plan today." To which I replied, "You tell me your plan and I'll tell you mine." He kind of laughed, but was taken aback. I laid out my desire to treat my daughter like a regular newborn and breastfeed on demand. I said that everyone else had had a chance and been wrong, so I wanted my chance too. I told him that if it was a bacterial over-growth (one of many thoughts on the problem), then the best idea would be breast milk. I also told him that Mike and I both thought that this was a good idea, but we wanted to try it in the hospital where it could be monitored. I promised to stop if she showed any problems. The doctor agreed to let me try it, but he was not happy.

To sum up... Hope took to breastfeeding like a champ. She has been nursing for 3 days now and so far, so good. Her blood work is looking better, her x-rays are looking better, and her stool is looking better. It still has occult blood (not visible to the naked eye) in it, but it is not rust-colored like it had been. And the best part.... she is so happy! She has been giving me these big, open-mouthed grins like she hasn't done in a long time. I am so thrilled! Please keep praying. I am so hopeful that this is going to work. She has her last dose of antibiotics tomorrow night, so that will be the true test. Does she keep doing well once she's off of the meds? Please, please pray that the answer will be yes.

If I don't blog or return e-mails and phone calls, don't worry. That doesn't mean things are going poorly. I've just been logging some really long hours in the NICU. I will try to keep you posted though. Thanks again for praying!


  1. Great pictures! She looks great (Hope that is ... And yes the other two as well). I am not good at taking risks to help others out or trying to communicate empathy, so here goes ... I empathize with how tormenting this has been and I so wish I could provide an answer. I can so understand the difficulties with doctors as Cheri and I have struggled through medical concerns (although not at this level). Cheri's experience with doctor's at Autumn's birth was troubling. I have struggled with the God part as well and again I wish I had an answer that made sense. If there is anything Cheri and/or I could do to help, please let us know. We are not very far away. I can only imagine how difficult this time has been. I have felt confidence from the very beginning that Hope would be fine and that she would be a special blessing in your lives. I say this trusting that it is helpful. If not I apologize. Just writing this note brings tears to my eyes as I can only think of what you both have had to go through. Our Church continues to pray for your family every week.

    Again, please give us a call if we can help in any way!


  2. Praise the Lord. It is so good to hear that Hope is nursing and seems to be doing better! I will pray that things will continue to go well!

  3. Thanks for the update and the darling pictures! Praying for healing for Hope and good job standing up to the "experts." Sometimes parents do know best for their child! (said somewhat sarcastically)

  4. It seems like you are correct in trusting your instincts since there seems to be so much disagreement in the medical area. Best Wishes for you and your family. Pat Syron

  5. Praise God! I will continue to pray for her improvement! Way to go letting your instinct to nourish lead....God very well may have instilled in you His plan, which very often differs from that of others..

    God Bless!

  6. Just goes to show you that medicine isn't everything! They aren't as smart as they think they are with their big degrees and all. Hope let you know she was ready and that was it!

  7. Praise GOD!!! I am so glad she is taking to breastfeeding and that she is tolerating the breast milk!! I am so thankful it is working! I continue to pray for her healing. I bet it feels wonderful to be able to nurse her... I am just so excited for you!!

  8. Lord, please help Hope. Please provide healing through her mama's milk. You've already intervened to save her life during her birth (and probably countless other times that we are unaware of), please continue to intervene now. Give the doctor's wisdom, but also give Amy wisdom and guidance through the Holy Spirit. Please comfort this family. It is such a difficult time, such a time of uncertainty. Please let them have hope through the midst of everything that's going on. Thank you for the blessing that this little girl is, the inspiration she has been and continues to be. Please let this be the path towards healing, what a better way than to let Amy and Hope's bodies work the way you designed them to! Thank you Abba.


  9. Sweet friend,
    I'm praying for you so much. My mom said that the baby could have colon problems from too much antibiotics that kill the naturally occurring flora in the gut as well as hamper your own immune system. I think that the naturally occurring antibodies in your mommy milk will be exactly what she needs. I'll be praying that God gives you the wisdom and the courage to stand up to the Dr.s when you need to.
    God bless you my friend
    Much love and lots of prayers