Snuggle Bunny

Tuesday, April 21, 2009 - Elle has had a fabulous two days. Monday was great and today was awesome too! When I walked into the NICU yesterday morning and saw our wonderful nurse Karen standing over Elle, I knew we were going to be taken care of. Karen was able to get the blockages out of Elle's nose and it has been smooth sailing since yesterday morning. I walked in bright and early this morning to find miss priss wide awake. She was doing great with her pacifier. Occupational therapy wants us to continue working with her on her pacifier - especially when she is eating. Sometimes it just wears her out - it must be tough being a baby! Karen told me today that princess Elle is now addicted to her binky. I would have to agree with Karen. She does what's called 'Frantic Rooting" when it comes to her pacifier. I think it is hilarious and could taunt her all day with her pacifier - but a crying baby is no fun so I usually give in!

Occupational therapy came by and worked with Elle at her 9:00am feeding. She only took 3 cc of milk by bottle before she fell asleep. Please start praying that she begins to feed by bottle! When Neo and Cardio made their rounds today - we discussed Elle's progress. She is doing very well - and was actually the most well behaved baby on the block on Monday night (which was a first - our little diva has a way of making sure all eyes are on her!). Dr. Spear, the attending Neonatologist said that if feeding is the only thing that is keeping her in the hospital - she is going home with a feeding tube. I can deal with a feeding tube if it means we are closer to going home. Dr. Nelson, the attending Cardiologist, put the order in that OT will continue to work with Elle until Friday and we will monitor her progress. If little to no progress is made, she is going home with a feeding tube. Pediatrics General Surgery came by this afternoon to evaluate Elle for the feeding tube. She will be having an upper GI some time this week to check for reflux and all that good stuff. If all is well (and she hasn't mastered the bottle) she will be getting a feeding tube put in her belly next week. It's called a G-Tube. I don't know too much about it, but I do know that it is a tube that goes directly to her stomach. Cardiology won't let us go home with a feeding tube down Elle's throat because of the risk of throwing it up and aspiration. Those are definitely not good things for a cardiac baby. We finally got the ok from our insurance company that the gene test for CHARGE syndrome is ok to do. They will be drawing 6 cc of blood from our little one early this morning and sending it off for the genetic testing. Because of the large volume of blood, Elle might need a blood transfusion. I was hoping the amount of blood they would need would be smaller - but oh well! We won't get the test results back for 4 to 6 weeks - and we will be home by that time! While we are having the test run, it really won't make a difference. We already know that Elle has the CHA of the syndrome (coloboma, heart defects, and choanal atresia). What we don't know is if she will have learning disabilities. The genetics doctor last week told us in not so many words that Elle will most likely be deaf. Her little ear canals are pretty deformed. This morning during rounds, Dr. Nelson told me that he had talked to Dr. Edmonds. Before we jump to any conclusions that Elle is for sure deaf, Dr. Edmonds will be running a few x-rays and will administer a hearing test. We will just have to wait and see. Hearing loss and partial hearing loss are another sign of CHARGE syndrome. Lee and I were talking about it tonight and we are not at all worried that our daughter will have hearing problems. She is a perfect little miracle and whatever gifts she has are gifts from God. I view being deaf as a gift. I watched my mom teach some of the most amazing children for 18 years that had hearing loss. No matter what - she is perfect. If Elle has to have the feeding tube put in, Dr. Edmonds will also go into the operating room and while she is under anesthesia, he will check the stints in her nose - possibly remove them and leave them out or maybe replace the tiny ones she has with a little bigger size. During rounds, the doctors didn't discuss anything about moving us up to the 15th floor. I think that because the feeding tube may now be an issue - they will keep us in the NICU until after she has that surgery. Maybe once she recovers from that they will send us up to 15 and then home! I am going to have a lot of training to do before we go home. Elle may have the feeding tube in which I will have to learn - she may have the stints it which I will have to take care of - she is on aspirin for her heart which I will have to administer - as well as lasiks and a multi vitamin. Karen already has me mixing up her aspirin and administering the multi vitamin. Tomorrow I will be in charge of the suctioning for the entire day...we will have to wait and see how this goes! Karen so far is the only nurse that has been able to suction out Elle's stints without even waking her up! We are lucky enough to have Karen for 3 straight days. I am totally making the most of her being with Elle! My parents came up early this afternoon and brought me lunch. We had a picnic outside in the perfect weather - it was so nice to get outside - even if it was for les than an hour. I had been at the hospital since 7:00am - so the break was much needed. After lunch, mom and dad spent the rest of the afternoon holding sweet Elle. We had to but Elle some mittens today from the gift shop. I have some at home - but have forgotten to bring them up everyday. Elle's stints have moved out a little further away from her nose - far enough away that she could easily pull on the stints. That would definitely be a horrible situation if she pulled those stints out - they are stitched to her septum to keep them from falling out. While my mom was holding her, my dad went to the Ro Ho and washed them for our little princess. It was possibly the smallest load of laundry ever - 4 baby mittens! My parents left and Vickie came up a little bit later. Lee, Vickie and myself all went up to the 15th floor because our nephew, Witt, was admitted there last night with pneumonia. We double and triple checked before heading up there - but his type of pneumonia isn't contagious so we were good to go. Please pray for little Witt(http://www.wittharrislupher.blogspot.com/). We want that little guy to hurry up and get better so he and miss Elle can be "normal" kiddos for a while and out of the hospital!! He and Elle are exactly 5 months apart from each other - so Witt's 6 months birthday will be on Thursday and Elle will be a month old. Crazy to think that our precious baby has been blessing all of us for almost a whole month! When Lee, Vickie and myself got back down to Elle's crib - we found her and her snuggle bunny! It was the most perfect way to end the day! I pray that Elle has a wonderful night tonight and continues to get stronger with each passing day. I pray that Witt improves and gets to come home soon. I pray that we get to come home soon so she can meet Reggie and Duchesse who are so anxious to meet their new little sister. I pray that our families stay strong while we have Witt and Elle in the hospital. I pray that we all have peace and courage and faith to get us through each passing hour. I pray for the doctors and the nurses and the surgeons - all of who hold the lives of our babies in their hands every day. I pray for the other families in the hospital and those we have become friends with - that their babies get to go home soon too. Lastly I pray that the Lord just hold us in the palm of his hand and guide us as make decisions for our children's health. Our God is an awesome God!