Lots of info

Sorry to be so late getting to the computer...I thank you all for your care and concern for our little sweetheart! It has been a long day so far....I am trying to collect my thoughts right now to share all of the info with you. It was a rough night last night...Lydia and I were up from 1:30-4:45...during that time, she took about 2 oz total. Then, when she finally got to sleep, the lab tech came in at 5:30 to take her blood. Thankfully, she fell back asleep relatively quickly after that. The next few hours were flooded with dr visits, nurses, friends, and phone calls. At times, I was answering two phones at once...my cell phone and the room phone, while trying to talk to the nurse and visitors at the same time....busy, busy, busy! :) We are so lucky to have such loving support! Amidst all of that, we were both trying to fill our bellies....Lydia took a full 2 oz at 9:30 this morning...that was better, but still only half of what her typical intake is for a feeding. This afternoon, she took about a teaspoon of oatmeal by spoon and about an ounce of formula. I have found her to do a little better with spoon feeding than bottle feeding...last night she enjoyed some sweet potatoes and rice cereal. We will definitely continue that.

Dr. Ramey came by on rounds this morning. He thought that Lydia looked good...suggested that we might be able to go home in the next day or so...I am doubtful of that...I don't think she could hydrate herself on her own at this point, not to mention that she would be lacking the nutrients that she needs. When Dr Ramey got back to the office, he spoke with Dr Guidroz. (Dr Wood is off today, so that is why his partners are seeing us.) Dr Guidroz called me....she feels like I do...we aren't ready to talk about going home yet. She told me about Lydia's blood test...protein level was normal, but her albumin (sp?) level was at the lowest end of normal (normal range is 14-40; Lydia's was 14.) The albumin level tests the amount of nutrients in her blood. This is crucial because what happens is that if she doesn't have enough nutrients, her protein level will drop....and if she doesn't have enough protein, her body will start to pull it from her muscles, which will then weaken her muscles. We would then have to work to build muscle mass again...which would mean that any development that she's accomplished through PT would have to start all over again. We obviously do not want this. I hope I am explaining this correctly...I feel like such a novice when I try to ingest all of this info...our nurse (who is more of an angel than a nurse) sat with me at length this morning trying to explain all of the options and their ramifications. She offered several hugs, encouraged me as a mother, and even offered to come sit with Lydia after her shift is over tonight so that Martin and I could take the girls downstairs for supper and a little special time with them. God has taught me so much through this entire situation...there are so many good and loving people in the world. We are so grateful and so blessed! So...to finish the medical info....Dr Guidroz wants to consult with Dr Alberty...she is calling him now to see what time he might be able to come see us. They will explore all options of getting Lydia the nutrients that she needs...possible feeding tube, button (different kind of feeding tube). I also have a list of questions for him, one of which is whether or not we could try an appetite stimulant...because the problem is obviously that she does not have an appetite...which brings me to my conversation with Dr Hollman today: Yes, she does expect Lydia's feeding habits to be so drastically affected by the weaning of ACTH. The difference for Lydia is this: most babies gain a large amount of weight and fluid while taking ACTH...to the point of being very puffy and overweight. Then, the lack of appetite after weaning just helps them lose the weight that they gainec. Lydia did not gain that much weight, and so, losing weight is not good for her now.

To be continued....Lydia needs to eat....