When Ida became sleepy the following day after her birth we were pretty certain that she was showing signs of her diagnosis of NKH. Ida’s initial labs came back and it confirms that she does in fact have NKH, the condition that she shares with her sister Tempa. The labs show that she has elevated glycine in both her blood and spinal fluid, giving us a positive diagnosis. We were hoping and praying that she may have been misdiagnosed, but also very expectant that she would not and would share a similar path as her sister. A huge gift of knowing prior is that she is getting treatment much sooner, she doesn’t need as much medical support as far as a breathing tube. She is able to get her glycine stabilized much sooner and the damage to the brain is much less because we are able to reduce that with her meds. She is doing pretty well and has perked up over the last few days, being more wakeful and has been doing some bottle and breast feeding. She still needs a little help with a NG tube to get all her nutrients and making sure she is getting all her meds.

Our plan is to get Ida a gtube which will make feeding more comfortable and will help us hydrate her if she is more sleepy, or becomes ill. We were told she could do it while we are in the hospital but, the GI surgeon, Dr. Thorne, gave us great advice as to why we should hold off for a bit. He said if it was his baby he would wait for her to get a little bigger as she is so small the site where the gtube is placed would be hard to keep clean and dry, and would make healing difficult. So we have decided to hold off and wait for that procedure until Ida gets a bit bigger.

With her results coming in and deciding to hold off on surgery we are potentially able to come home in the next few days. Which is both exciting and terrifying as the care she has in the NICU is so wonderful. Pray for us as we navigate life with 3 littles at home, that we would continue to make good medical decisions for Ida, that we can balance life with 2 medically needy daughters, for sweet Ikey boy and for continued peace and trust in our Savior Christ Jesus.

We have been in a really great spot physically and mentally with all that we are dealing with. That is truly from the Lord and from all the prayers of peace washed over us. We are able to find joy and excitement in this precious daughter of ours and that is a huge gift from God. As always thank you all for your support and continued prayers.

Love,

The Newbolds