Wednesday, April 29, 2009

We Knew It!

Wednesday, April 29, 2009 - The nurse walked into our room this morning and told us that Elle's surgery was scheduled for 10:30am. She said they would be up to get Elle around 10:00am. At 9:00am, she walked in again and said they were actually on their way up right then to get Elle. The transport nurse walked in and told us that we could carry her down to surgery if we wanted - so Lee and I began the arduous task of undressing Elle. I need to get it on video - but Elle does not like getting clothes put on her. Once they are on, she is fine - until you try to take them off - and then she squirms around and screams and almost makes it impossible to take her clothes off. Fifteen minutes later, Lee and I have our little diva undressed and wrapped in a blanket, ready to take her down to surgery. That's when we got "the news." An emergency had come up and Elle got bumped from surgery. Oh great! They told us that there still might be a chance that Elle would be going down for surgery so Lee and I just hung out for the rest of the day. It wasn't until 4:00pm that they told us that she wasn't going in for surgery today. Dr. Justino, the attending cardiologist on the 15th floor came in and talked to me about what had happened today. Evidently, the surgery Elle got bumped for also took her bed in the CVICU. He said (in a non direct kind of way) that it might be a while before Elle gets scheduled for her surgery. It is going to have to be coordinated between Dr. Wesson, the pediatric surgeon, Dr. Edmonds, our ENT, the anesthesiologist, and a recovery floor (either the NICU or the CVICU). When the doctors made rounds this morning, they told me there was a chance that Elle would be admitted to the PICU (pediatric intensive care unit) after surgery. For the second day in a row, I put my foot down. There is no way I will allow Elle to go to the PICU for recovery. The PICU is for children that have come into the hospital with who knows what. Elle has never been out of the hospital - and she is a heart baby. If she were to get an infection, it would go straight to her heart. That's the whole reason we are getting a feeding tube put in - so we can go home and greatly diminish the risk of Elle getting some sort of outside infection. The cardiology team told me they would voice my concerns to the surgeons. I'm hoping and praying she doesn't have to go to the PICU for recovery!! We received a notice today concerning the toddler that died of swine flu and what the hospital had done to ensure our well being. This place is so big and yet we feel so isolated. Cardiac kids are kind of in a world of their own. Cardiac has their own surgery floor and ICU, they have their own waiting room for the surgeries, they have their own recovery floor and they have their own block with specialized nurses in the NICU. It is incredible the resources we have available to us and the treatment we have received so far. I ran into our wonderful nurse Karen today. I miss the NICU and the wonderful nurses! There is a huge difference between the NICU nurses and all the other nurses we have had so far. I can not begin to say enough good things about the nurses we had in our stay in the NICU. I really wish I could take the nurses from the NICU and transplant them onto 15!! Right now, I am praying for patience for myself and our family members as we wait for Elle's surgery. It is a blessing in disguise that her surgery was canceled for today. Lee wasn't feeling well and was in no shape to sit in a waiting room waiting for updates during surgery (no - he doesn't have swine flu). It also allowed me some quality time with Dr. Justino. When he came in to talk about the canceled procedure, he walked in and sat down in a chair and just sat with my mom, Vickie and myself for probably about 30 minutes - answering our questions and explaining stuff. It was so nice to have him just be here without his usual entourage of residents, nurses and nurse practitioners. He is leading a study here for patients that receive a BT Shunt and he wants us to participate in the study. I know his reason for stopping by was more related to the study, but it was so comforting for him to talk with us. It looks like we will just be waiting until they can schedule Elle for surgery and who knows when that will be!! Since Elle didn't eat from 2:00am until 4:00pm - she slept all day - which means Lee and I are in for a very long night!! Lee and I are so grateful for your unceasing prayers and support. The comments on the blog, prayer requests through churches, kind emails and letters mean so much to us. They have truly been a help in getting us through the last 5 1/2 weeks!

Tuesday, April 28, 2009

She's Goin' Wireless

Update on Monday, April 27 and Tuesday, April 28 - The days on the 15th floor are starting to run together just like the days in the NICU were. Before I know it it"s midnight and all I want to do is crawl into bed and sleep until I can't sleep anymore. Those days are long gone!! Monday morning the cardiologist walked into Elle's room and announced that they were going to take Elle off of all her monitors. I almost laughed out loud because I didn't think they were being serious - but sure enough - an hour later - Elle was officially wireless. It was so weird not to hear all the beeps and alarms. I spent a majority of the day staring at Elle making sure she was still breathing because I have never seen her without all the monitors. The good thing about no more monitors was that I could pick her up and walk all around her room with her. That was definitely a first for us! My mom got Elle her first mirror and she was enthralled when she saw her self for the first time. It was pretty funny to watch! She has been staring out the window for the past few days so seeing something new was exciting for her! Monday night was a relatively good night. Elle slept until around 3:00am and then was up off and on for the next few hours. First thing Tuesday morning, the nurse told me that surgery had been scheduled for Wednesday morning. I spent the day going over consent forms with the various doctors and also moving rooms. Elle has been down-graded so we aren't in the step down room anymore. The room she is in now is 1 nurse to every 5 patients instead of 1 to every 3 patients. Moving just a few doors down was horrible - I can't believe how much stuff we have accumulated in the last 5 days! The room we moved into is smaller so all the stuff barely fits! Elle had an ok day - she hardly slept at all so we thought she would sleep great tonight - NOPE! Poor thing just fell asleep and it's 1:06am as I write this! I think she knows that she is having another surgery tomorrow so she is nervous. She will be having her feeding tube put in and Dr. Edmonds will also be taking out her nose stints to see if they can stay out of if she can put in bigger size stints. I am praying those stupid stints can come out. The last few days have been horrible to take care of them. None of the nurses have ever seen those stints so they don't exactly exude confidence while they are standing over my 5 week old daughter about to stick a catheter down her nose. I have showed them all how we have figured out how to take care of them - but it is still difficult for them to do it. I hope and pray they come out tomorrow!! For some reason, I am more worried about Elle's surgery tomorrow than I have been for the past few surgeries. I think it is because I haven't met the surgeon so I haven't been put to ease as I have with the past 2 surgeries. Hopefully we will get to meet him tomorrow. The bad part about being on the 15th floor as compared to the NICU was that in the NICU - the attending doctors and fellows and residents were always walking around - so if I had a question - I could ask them and would have an answer immediately. Here - I only see the cardiology team once in the morning and then don't see anyone except our nurse for the rest of the day. If I have a question - they have to call the resident on call and then maybe we get an answer - but most likely not. I really wish we were back in the NICU right now just for the support from all the doctors, nurse practitioners and nurses. I feel like we are going into this surgery tomorrow for the G Button half way prepared. I am just going to have to place my trust in our doctors tomorrow and in the Lord - that He will guide the surgeons as they operate on our little baby.

Sunday, April 26, 2009

Weekend Update

Saturday, April 25 and Sunday, April 26, 2009 - Elle has had a good weekend. Her sleeping pattern is still pretty erratic but it has gotten better. She slept a little better on Friday night than she did on Thursday night and last night she slept from 10:30pm until 3:00am. I'm afraid that I have been a bad mom in the dietary department and I ate something that is upsetting her stomach. At least that is what we think is going on. For the past few days Elle has thrown some major hissy fits and then she will calm down for a bit and then go back to throwing her fits. At first the nurses were giving her Tylenol with codeine and then yesterday, one of the nurses suggested that it looked like she was having gas pains -so she requested Mylicon. Sure enough, Elle calmed down within an hour of taking it. I better start paying more attention to what I'm eating because I definitely don't want to continue to go through Elle fits! Our poor baby!! Saturday afternoon, the cardiology surgery nurse came by to take the stitches out of where Elle's chest tube was. She was sitting there talking to us and then before we know it - she goes into all of the discharge information! She started telling us about how to care of Elle's incisions, what to look for in case her heart starts acting up, who our outpatient cardiologist will be...the gamut. It kind of shocked Lee and me - especially since we have been told that the feeding tube surgery won't be until the end of next week and then recovery will be a few days - so we are looking at being here at least another 2 weeks. She even went over when to schedule CPR for us and car seat training. I'm praying she comes back in a few days and goes over everything with us again! I think I was in too much shock about the discharge information to adequately listen to what she was saying!! Today, Carmen, another surgery nurse came by to check on Elle. I told her I was worried about how pale she was. Carmen looked at me and said "well - you're pretty pale yourself!" I just had to laugh because I realized I haven't been outside for an extended period of time in the last 5 weeks. The bad part about being on 15 in a private room is that someone has to be in the room with Elle at all times - which means that I can't leave her during the day unless one of our parents is with her or Lee is here. Being with her 24/7 as opposed to 16/7 will take some getting used to!! The great thing about the 15th floor is that we can hold Elle without having to ask to be sure it's ok. She is only attached to the monitors for her heart rate, oxygen level and breathing - so she can sit in daddy's lap all day long!

Friday, April 24, 2009

15th Floor = Sleep Deprivation

Friday, April 24, 2009 - Lee and I spent the first night with our little princess last night. I'm not sure if the big move threw Elle's normal schedule off or if the night nurses in the NICU have been REALLY tolerant of our little princess but she didn't sleep at all last night. Lee tried to sleep while I stayed up with Elle. I rocked her to sleep a few times and each time I put her back in her crib, she started wailing. Of course her binky helped - but I was in no shape to stand over her crib holding her binky all night. At 3:30am I finally sat down and fell asleep. I guess I was totally out because Lee got up and took over Elle duty until about 6:00am. The nurses were in and out of the room - but neither one of us could just sit there and listen to her cry. Lee had to go to work on about 2 hours of sleep. Poor guy! Some of my wonderful friends came by this morning with the most glorious coffee ever! I have never tasted caffeine as wonderful as that Starbucks!! Jess, Angelle and Danny got their Elle time in and right as they were leaving, the nurse notified me that they were taking Elle down for her CT. The CT took about 20 minutes and she was back up and in her room. Thankfully, they didn't have to sedate her for the CT - they just wrapped her up and she was fine. I guess her not sleeping all night was a good thing! Around 2:30pm, Elle finally woke up. My goal this afternoon was to keep her awake as long as possible. My parents came by and with their help we managed to keep her awake until around 5:00pm. She spent a majority of her day looking out her windows! She does have a pretty cool view - so I don't blame her for looking out the windows all day! Of course, by 5:30pm - she was out! Maybe she will play sleep catch-up tonight and sleep all night - I think that may be wishful thinking - but oh well! Dr. Edmonds came by this evening to check on her. I asked him if her had seen the CT results yet and he said no. He also told me that he isn't too worried about Elle's hearing. He looked at the first CT she had done and while there are deformities in her ear canal that will most likely lead to hearing loss, it may not be complete hearing loss. But - he also said that we need to wait and see what this CT shows and then do the hearing tests. He said that Elle's issues are her heart, her nose, her feeding and then her ears. I said "in no particular order - right?" His response was - "No - in that exact order." So - we will have to wait and see what the CT from today showed. Elle is scheduled for the feeding tube to be put in late next week - until then - we just work with her on taking more and more of the bottle. She took 6 cc today which is double what she has been taking. We are so thankful for just 1 cc at a time!! She is making so much progress and we are so happy her!! We pray for her continued success and that she learns what is day time and awake time and what is night time and sleepy time!!

Thursday, April 23, 2009

A Very Happy Birthday!!

Thursday, April 23, 2009 - HAPPY BIRTHDAY ELLE!! Today Elle is one month old! My mom, dad and I walked into the NICU and the first thing we did was sing Happy Birthday to our little princess Elle. She had a great morning and at around 9:00am - the neo team and the cardiac team were making rounds. They ran through Elle's vitals and then our wonderful nurse practitioner, Princy, made a request. She said that since Elle had been so stable for so long - she was the perfect candidate for a step down room on the 15th floor. Dr. Nelson, the attending cardiologist, asked me if I would be able to take care of Elle's suctioning. I told him that Karen had taught me the best way to suction out Elle's nose and I felt comfortable doing the suctioning - so he gave his blessings for us to move to 15. On the 15th floor, there are 5 "step down" rooms and the rest are regular rooms. The 15th floor are large rooms with a bathroom, pullout couch, tv... where the family has to stay with the patient 24/7. The only difference between the step down rooms and the regular rooms is that the step downs rooms are 1 patient for every 3 nurses and the regular rooms are 1 patient to every 5 or 6 babies. I didn't think it would happen today. Since there is such a demand of the rooms on the 15th floor - I was pretty sure the move would happen this weekend sometime. I was wrong! I was talking with one of the neo doctors and she said - " you know you have a room - right?" I think my mouth must have hit the floor because I was shocked. After 31 days in the NICU - we are moving to a private room. It was a mixture of excitement and fear about the move. Excitement about being in a private room and fear because our wonderful nurses and doctors that we have grown to know, love and trust won't be right next to us. It was so "freeing" being in the NICU and knowing that if an alarm went off - Elle's nurse was no more than 10 steps away and could take care of it. In 15, the nurses are outside the rooms and the parents are the primary care givers. The move didn't take anytime at all. We found out that we had a room around 1:00pm and we were in our room by about 4:00pm. We said goodbye to all of our nurses and doctors and headed to our new home. Elle is definitely going to be one of those kids that likes car rides because she loved the ride in her crib. What a wonderful birthday present! When we got into the room, the first thing we noticed was the absolutely quiet. It was so nice to not have all the monitors going off every 2 seconds. We spent a wonderful evening with the family and even dressed Elle up in her little ballerina tutu for her birthday picture. Lee and I are so blessed with our little angel!

Hebrews 11:1 "Now faith is the substance of things hoped for, the evidence of things not seen."

Skin to Skin and Revenge Again

Update on Wednesday, April 22, 2009 - Yesterday was a great day. My mom, dad and I got to Elle's bedside early in the morning. The first thing we were told was that our little miss would be going for an Upper GI that morning to check her insides. They told us it was scheduled for 9:00am - and sure enough they came for her at 9:00am. That was definitely a first for a procedure! My mom and I got to sit in the room while they did the Upper GI. It was really cool to watch on the screen while they injected the barium into her stomach and then her throat. Her stomach and intestines look good. She has reflux but we were told that was relatively normal. They did the Upper GI to check to be sure everything looked good for the feeding tube. Everything looks good - so we are set for Elle to get the feeding tube next week sometime. At noon, Elle and I were able to spend some quality time together. The doctors and nurses encourage the moms to spend as much time as possible with their babies - if their babies are well enough. Since Elle is having some difficulty eating, Karen suggested to the doctors that we try non nutritive nursing. They agreed - so Elle and I tried non nutritive nursing yesterday. It was so special - my mom was there. She cried - I cried - Karen might have cried... it was a pretty emotional few hours for us - only because it was so special. Elle got the hang of it for a few seconds - but then she just got too tired. She fell asleep on my chest. She is so tiny!! I loved every minute of it. Since it was Karen's last night with Elle - we got Lee to bring up some clothes so we could play dress up with our little princess. I'm sure Lee thought it was ridiculous - but he indulged us and picked up some of Elle's clothes on his way up to the hospital after work. Yep - we dressed Elle up in animal prints. She was the most stylish baby on the cardiac block! Later on the evening, I walked into the NICU after visiting Witt to find some "revenge" hanging from Elle's crib. My dad had hung one of my future golf trophies fromt he end of Elle's bed - so Vickie needed to find something perfect for a future ballerina. Grandma Vickie (Vivi) with the help of her sister, Tanya, finally found the perfect out fit for our princess. Two outfits perfect for a future ballerina! Not only was yesterday dress up day - it was also bath night. I wasn't feeling well, so I asked Vickie and Lee's aunt Tanya if they wanted to give our little princess a bath. They jumped at the chance and did such a good job!! Vivi and Gatty (Great Aunt Tanya) handled bath time like pros - I don't think Elle even cried! It was such a wonderful day. Praise the Lord that Elle is continuing to get stronger and improve on a daily basis!

Tuesday, April 21, 2009

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( 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!

Well, it’s been a month……we’re still here, but hold on, is that light I see?

Nose clogged setback Sunday is over.....Now its Monday.....and she can BREATHE! Monday greeted us with a great nurse, plenty of baby beauty rest and dirty diapers! The doctors feel that Elle is doing very well, besides the whole taking a bottle issue. I guess for now we wait for our next step. It sounds like they will continue to work on Elle's feedings through the end of the week then devise a plan to get her out of the NICU. Now we wait, hope and pray that she will learn to take a bottle.

Monday, April 20, 2009

1 Step Forward and 2 Steps Back

Sunday, April 19, 2009 - Now before anyone starts to panic because of the title - be reassured that Elle is doing fine (although she did have a tough breathing day). The blog title is more referring to me than is it to Elle. Lee and I walked into the NICU this afternoon around 2 and immediately hung up Shannon's painting for "The Adventures of Princess Elle and Ladybug Lucy" on Elle's "circus cage" crib. My parents had been with her for the late morning and early afternoon and said that Elle had been doing wonderfully. A little later on, we were told Elle might be well enough to be moved to the 15th floor. This is wonderful news! It means that the Cardiologist are pleased with her progress and she is one step closer to going home! Around 4:30pm, our normal day nurse, Estrella, had to leave to go and take care of an extremely sick baby in a different pod. Another nurse came over to be with us. This nurse had no idea how to suction Elle and has never been around her to know her tendencies. We had missed the 3:00pm suction because Estrella was going over Elle's chart with the new nurse. At 4:30pm, Elle's breathing was getting a little labored so we decided to suction her nose. I asked to do it since I have been watching and helping the nurses do it for the past two weeks. I tried to get the catheter into her left nostril and was only able to get down 6 cm until the catheter hit a blockage. I tried again and the same thing. This whole time, Elle is screaming and the nurse is trying to calm her down. I tried the right side with the catheter and it went down to the required 9cm - no problems. The nurse then sat Elle up and took the catheter away from me and proceeded to suction out her nose herself. She told me that I needed to be pulling the catheter up faster once I reached the required 9 cm. I just looked at her and was silently screaming at her. Not only way my baby in pain - and I am causing it - but this nurse who has never even seen my baby comes over and tells me how to do something that she has never done before. Elle's stints in her nose are a first for everyone in the NICU. None of the nurses have ever seen stints like what Dr. Edmonds put in - let alone cleaned them out with a tiny catheter. I was fuming, but let it pass. Then she asked if I wanted to hold Elle and try to calm her down. Of course I did. I held Elle for about 15 minutes trying to get her to calm down - she was going back and forth between calm and fussy. Of course I am in pain trying to get her to calm down but I can't. The nurse came over and told me that Elle should have calmed down by now - she took her from me and she and Lee put her back on the bed and proceeded to try to suction out her nose again. I just sat in the chair. The nurse looked over at me and asked me if I was ok. I just nodded but the tears were welling up. The past 4 weeks I have felt helpless. You can't help but to feel that way - especially when your baby is attached to so many tubes and wires. It's not like you can just pick them up and try to comfort them when they start crying. The feeling of helplessness is just something that you have to get over - but tonight I felt useless. Here I am trying to suction out Elle's nose and then trying to comfort her from the pain of the whole suction process and I have a nurse who steps in and thinks she can do a better job than I can. I felt helpless and useless. I lost it - I didn't say a word to anyone and just walked out. I had to escape. I went to the milk bank and went into one of the curtained off areas. I just sat there and cried. The worst part about it was that there was another mom in the area next to me crying too. I heard her crying and it made me cry even more. The whole time I was gone, Lee and the nurse were trying to suction out Elle's nose some more. I was typing as fast as I could to Lee to tell him to stop suctioning out Elle's nose. Every time the catheter goes down her nose - it irritates it causing swelling. I had already suctioned her once and here they were doing it over and over again. Poor baby just had enough. He finally let me know that they had stopped around the same time I finished in the milk bank. By chance, I had put a journal in my bag today to keep track of the amount of milk I am turning into the milk bank. It was a gift from Lee's grandmother and I had never really paid any attention to the cover of the journal - other than to notice that there is a cute picture of a shoe on it. Today I looked at it and three little words jumped off the cover of the journal and instantly brought me peace. There's a picture of a high heel on the front and under the picture are the words "walk in faith." Here I am sitting in the milk bank having a pity party for myself when I should be "walking in faith." I can't control Elle's reaction to the catheter anymore than I can control what the next hour may bring. I can't control the nurses actions anymore than I can control the weather! I took a deep breath and sat there soaking in everything that had just happened. By chance - I put that journal in my bag today. I've never written in it and quite frankly - I don't even know how it ended up on the kitchen counter this morning. I don't know what possessed me to start tracking how much milk I am turning in today and why I didn't start doing that 4 weeks ago. I do know that at the very time I needed a reminder of how I need to handle each hour of each day - I got it. I put myself back together and went back to be with Elle. I took her out of her crib and held her and tried to comfort her. She was still pretty angry - but I would be too if I had tubes up my nose that people kept suctioning out. The rest of the evening past as a blur. Finally at 7:00pm - the horrible nurse left and one of the wonderful night nurses came in. Elle was still being fussy and throwing hissy fits so Lee and I decided that she needed some medicine for the pain. The nurse gave her Tylenol. The whole afternoon, Elle's breathing was just off. She had been doing so well and after the suctioning she got - she wasn't breathing out of her nose at all. She was sucking in her bottom lip - a sure sign that she couldn't breathe out of her nose at all. We decided to suction her again at 9:00pm - before her feeding. Lee did it and was able to pass the catheter down to 9 cm on both sides - so the tubes aren't blocked - but Elle was still having difficulty breathing. It is so hard to sit there and watch her struggle. The neonatologist team came by and talked to Lee around 10:00pm. While it looks like Elle is having difficulty breathing, her stats are all good. They told him they would monitor her closely tonight - but she is showing no signs of being in distress. Laurie, our night nurse, was also reassuring. She has been with Elle before and knows her tendencies. We finally left around 10:45pm - after hearing both the doctors and Laurie say that they felt she was ok - she just has something in her nose or back of her throat that needs to work its way out. When we left, Laurie had fixed her so she was lying on her side and her breathing was much better. It made it slightly easier to leave. I am so worried about my little baby but I have to trust that she is fine. She has a wonderful team of nurses and doctors watching over her at all times and she is in the hands of a gracious and wonderful Lord. I have to have the patience and knowledge that my job as Elle's mom is to walk in my faith. Faith that the Lord has a wonderful plan for little Elle and sometimes my human eyes and heart can't grasp what is going on - but He knows. Today was an eye opening experience - The Lord sent me a reminder today that in order to get through this experience, I have to place all my trust and faith in him and he will see us through!

Sunday, April 19, 2009

Big Day for Little E

Saturday, April 18, 2009 - On our way home on Friday night my parents called and asked if they could do us a favor. Of course was our answer! They decided that they would go up to the hospital early Saturday morning so Lee and I could stay around the house - clean up a bit - play with the dogs - and take our time getting into the hospital. It ended up working out remarkably well. We called the nurse this morning and she told us that Elle was going to have a big day ahead of her. OT was going to work with her on feeding and she was also going to be moved into a "big girl bed." I personally hate the "circus cage" beds they move babies into that are doing well - but the "bird cage" means Elle is doing well enough to no longer need the heater. Lee and I thought we were going to make it into the hospital by noon - just in time for OT to work with Elle - but the weather was so bad here that it took us 2 hours to get to the hospital. It didn't help that we had to stop to get more snaps so Lee could fix more of Elle's outfits! Estrella, our day nurse, had given Elle a bottle at her 9:00am feeding. She took 5cc of milk by the bottle. When OT worked with her at noon - Elle took 3 cc of milk by her bottle and then fell asleep. Eating is a lot of work! My parents spent the morning with Elle and I kept getting updates and pictures from my dad. I am so thankful he has a blackberry! The only scare we got was when Lee got an email asking what Elle's oxygen saturation levels were supposed to be at. This immediately raised red flags for the two of us and I called my dad in a slight panic that something was happening and we weren't there for it. No worries though - the nurse from the night shift has taken the leads off of Elle when she weighed her and had neglected to re-set the limits of what Elle's oxygen saturation is supposed to be - so the alarms were going off every 3 seconds when Elle would take a breath and her oxygen level would drop. Because of Elle's heart condition - her oxygen limits should be between 75 to 95. The limits on the machine were set from 85 to 95...which is a huge difference...especially for the people that are there that have to listen to the constant alarm going off that something is wrong. Vickie and Lee's grandmother, Meme made it up to the hospital before we did. Meme was able to hold Little Elle for a while. I think she has the magic touch because Little Elle looks quite content! It is so much easier to hold her now that she doesn't have too many wires and tubes to deal with! When Lee and I finally made it to the hospital, they were ready to move her into her bird cage. I didn't take any pictures of her new home because it is still too sterile - I need to dress it up a bit before I post any pictures! The big girl bed means we are one step closer to coming home - we just need Elle to start swallowing the milk! This evening, Lee and I got to give Elle a bath (which is still a 2 person job because she hates every minute of it). Lee then changed Elle's diaper and suctioned out her nose and then he got to try to feed Elle from the bottle. It was a total daddy/daughter day! Elle is doing extremely well on her breathing out of her nose. She seems so content now and is also staying awake for more and more of the day. Her eyes are open and she is focusing on different people and things. She just looks around all day! She hasn't had to have any Tylenol in the past 2 days so I am thinking that her pain has greatly diminished. She has also been taken off of every medication she was on. She only gets a multi vitamin. The only IV she still has in is the PICC and they are running saline with heprin in that to keep it cleaned out in case they need to use it for anything. She has the most dirty diapers out of all the kids on the cardiac block which means that she is tolerating her feeds extremely well - now we just need her to figure out suck, swallow and breathe!! We were living life one hour at a time for the first few weeks Elle was in the NICU, now we are living life 3 hours at a time because that is when Elle gets fed! One thing at a time!! I have to keep reminding steps...the Lord will guide her and help to teach her all in his wonderful, perfect timing. She may figure it out tomorrow or she may figure it out in a week - there is only 1 person who knows and he will be revealing his plan for our little eater all in due time!

The Ultimate Experiment

Friday, April 17, 2009 - Lee emailed me as he was walking into TCH that he had an experiment. I knew this was either going to be really good or really bad. Lee rounded the corner and didn't have anything with him. What? What is this so called experiment? He went with me into the milk bank and showed me his experiment. He had stopped at home after work and picked up one of Elle's onesies. He also stopped at Wal-Mart and bought a contraption to put snaps on clothing. He had already taken out the seam on one side of the onesie and while I did my thing in the milk bank, Lee proceeded to put snaps down the side of the onesie. Leave it to "Handy Smurf" to come up with a way to dress our baby! She still has the PICC line in her right arm - so her arm can't go through anything. Lee put snaps down the side so he could just snap it up around her arm! How clever is he?! The nurses went crazy over Lee's invention. They loved it - and for as much as Elle likes being naked - she really liked her new outfit too! Way to go babe!

Friday, April 17, 2009

Playing Favorites

Friday, April 17, 2009 - Elle has had a wonderful day! Vickie and I got to her bedside around 10:00am - just in time to meet the nurse from cardiology that was there to take out her chest tube. Before she could take it out - she had to make Elle cry to see if the monitor picked up anything. I'm not sure the real reason to making her cry - but I told Elle it was the first and last time I would make her intentionally mad enough to throw a hissy fit. We had just got out the catheter to suction her because we knew that was a sure fire way to get Elle angry. I guess she saw the catheter being passed to me by the nurse because she flipped out and started crying. We didn't even have to suction her! The nurse was satisfied when she watched Elle cry that everything was good to go with removing her tube. Even though the procedure only took 2 minutes, I couldn't be back there to watch the tube being removed so Vickie and I escaped for a few minutes. We came back to find a pretty content little girl. They had given her sucrose instead of morphine. She was still in shock over the sucrose and was intent to suck on her lips to get every last drop of the good stuff! OT came by a few hours later to work on Elle's eating. OT was here at the same time that Dr. Morales came down to check on Elle. Of course, Dr. Morales wanted to get an x-ray to be sure everything looked ok - so OT couldn't feed Elle any more than 1cc - so her training today consisted of her taking 1cc of milk while sucking on her binky. She did great and the therapist was pleased with Elle's reaction to sucking and eating and breathing. We will get her to eat 1 cc at a time! Elle was finally able to get her 3:00pm feeding - a whopping 70 cc of milk! They are going to fatten her up! I was also pleased to hear this morning that endocrine decided to stop Elle's vitamin d supplements. Since she is eating milk, she is getting a lot of vitamins and minerals - but she is on a multi vitamin. Yesterday, I was talking with my cousins and they asked which doctors we will have to follow up with once Elle leaves TCH. I jokingly said - every doctor but the endocrine doctors. I was wrong! When the endocrine team came by last night - they told me that they will want to see Elle in their outpatient facility! Ahh! I guess we will be seeing a lot of doctors after our stint here is completed! Thursday night, Elle received her first personalized piece of clothing. I would have thought that my mom would have had stuff embroidered as soon as she found out the baby's name...but shockingly enough - it was my brother that came through with the first piece of personalized clothing! He had a t-shirt made that says "Uncle Benny = My Favorite." Talk about the ultimate in subliminal messages - this goes beyond that to blatant bribery! Ben is going to have his work cut out for him though if he wants to win the "favorite uncle" award. I know 2 other uncles that are already pretty high on the "favorite uncle" list in Elle's book!

Thursday, April 16, 2009

Elle Burrito

Thursday, April 16, 2009 - When Lee and I left last night our little princess was not a happy camper. It was so tough to watch and not be able to do anything as she just cried and cried. She had been given morphine at 6:00pm with the hopes it would calm her down. She gets so mad she starts to turn red and then she turns purple - not something any parents wants to sit there and watch. All we want to do is pick her up and tell her everything will be ok! I started to think back to the morning and her reaction to the morphine she had been given at 8:30am. It had been similar to her reaction this evening - she would fall asleep and we would think she was doing ok and then all of a sudden - the crying and carrying on would start again. I don't think she likes morphine very much - either that or it doesn't have that much of an effect on her. You could tell she was still in so much pain. The nurse waited a few hours and then gave her some Tylenol with codeine in it and she was asleep and peaceful within a few minutes. Tylenol is Elle's key to peace! We left her bedside when we finally got her to sleep around 9:00pm. We called periodically throughout the night and early morning and she slept for 6 hours once we left. Yeah!! All in all she had a good evening once we figured out that she is not a morphine girl! I got to her bedside bright and early this morning. As soon as the NICU doors opened and I walked in, I could hear her cry from across the room. The only thing I could do was smile and say "yep - that's mine!" Elle had a rough morning coupled with the fact that I had a rough morning. Neo made their rounds and said that everything looked good. They wrote the order for the Occupational Therapist to begin working with her on feeding. They also said that their goal is to get her to eat so she can go home. My thoughts too! I missed the Cardiac team's rounds - but Princy - one of the absolutely wonderful nurse practitioners - came by and brought me up to speed. When they did Elle's x-ray this morning, they noticed that there was a slight build up of either fluid or air around her chest tube. Everything had been fine with her chest tube until today. It wasn't suctioning out any fluids and the Neo team had even suggested that it should be taken out today. Cardiac's solution to removing the build up was to put an oxygen mask on Elle. It's bigger than her face (you can't really tell how big it is from the picture)! The mask pumps in oxygen into her mouth and nose and helps expand her lungs. Their thinking was that her lungs expanding would push the fluid/air out. We are waiting on another x-ray to see if their thinking worked. While it was tough to see the big mask on her face, Elle did really well as far as her breathing for the rest of day. The occupational therapist came and worked with Elle on eating. She was able to take 1.5 cc from the bottle and 1.5 cc from a syringe and her pacifier. We still have 57 cc to go before she is eating her full feeds from the bottle. But - every little step is still a step forward! OT will be working with Elle everyday to get her to breathe out of her nose and eat at the same time - she said it might be slow going...but we are prepared for that! This afternoon was a lot better than this morning as far as Elle's comfort is concerned. My poor baby gets so upset sometimes! The closest thing I can to do holding her is to sit her up in her little bed until she calms down. She just looks at me with those big eyes and eventually stops wailing. I can't wait for the day when I can pick her up and walk around with her and tell her that everything will be ok! I know that day is coming soon - I can't say when it will be here, but I just know that it is coming soon!
The nurses have figured out that 1) Elle likes to be swaddled - hence the Elle Burrito and 2) if they don't swaddle her - she pulls at all the wires - which is never a good thing!

Wednesday, April 15, 2009

Movin' On Down

Wednesday, April 15, 2009 - When Lee and I left the CVICU last night - all I could think about was our poor night nurse. Miss Elle is quite the diva. We had heard that heart babies have tempers and it seems that our little lady definitely lets you know when she's not happy. Our sweet nurse last night was having a field day with Elle before we even left. Elle's nose was blocked up, so she had to suction her a few times - none of which Elle enjoyed. The day nurse had taken off the tape that was around Elle's head - but she threw such a fit that she couldn't remove the rest of the tape that was on her back. Not only did the night nurse have to remove the tape on her back, but she also had to give Elle a bath. Lee and I left before it got too bad. We called early this morning and Elle finally settled down around 11:00pm and slept a few hours. She was wide awake when I got there this morning. The first thing her nurse asked was if I wanted to feed her. What - without a tube? She said that we could go ahead and try to bottle feed her since she does so well with her binky. Her first taste of milk in her mouth was pretty funny. We had put a few drops on her binky when we were trying to get her to start sucking - but this was her first big taste of it. I think she was confused - some of the milk stayed down, but a majority ended up coming out the side of her mouth. We eventually had to put a feeding tube in so Elle could get her first real meal since Sunday night. During rounds in the CVICU, the attending cardiologist, Dr. Rossen, told me that they were ready to move Elle to the NICU. Praise the Lord! Not that I didn't like the CVICU and the doctors and nurses - but Elle was sharing a room with 2 other babies and I just wasn't comfortable in the room with 2 other sets of parents. Around 11:00am they started the process of moving Elle back down to the NICU. It is such a process to watch them unhook everything and then re-hook everything to monitors that travel. Thankfully, Elle was traveling light for this trip - the only medicine she is on is Tylenol with codeine for her pain and aspirin for her heart. It is amazing to me that just 2 days after having her heart messed with - she is doing so well. Babies are so resilient and our Lord is so amazing!! Elle was quite content once she got her morphine at 8:30am and then her milk around 9:30am. She even fell asleep with the binky still in her mouth - no binky bondage to keep that thing in! Elle was moved back to the NICU at noon. From noon to 3:00pm - Estrella, her nurse, Laura - another nurse and myself were trying to get her calmed down. Little Elle was not a happy camper. Laura finally looked at her chart and realized that our poor little baby hadn't received any pain medicine since 8:30am. No wonder she was such a grouch! They gave her some Tylenol with codeine in it and she fell asleep within 20 minutes. Poor kiddo has been run through the ringer and she isn't even a month old! I am praying that she continues to sleep for the rest of the afternoon. She hadn't slept much all day - and she needs her rest! I think the tentative plan is to take the drainage tube out of her side sometime tomorrow. I can't wait for that thing to come out so I can hold her! Dr. Rossen said that we will be in the NICU until Elle can breathe and eat at the same time. After that we will be moved to the 15th floor for about a week and then we will be home! I was emailing Lee this morning while all the plans for moving were going on and his response was "I'm kinda nervous - everything is happening so fast." It really is - but as I sit here watching her stats (I'm sitting down so I can't see her precious little face) - I marvel at the work our Lord is doing. He has a plan for this little one - a mighty plan.
Isaiah 25:1
"O LORD, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago."

Tuesday, April 14, 2009

Left Eye Lupher is Back!

Tuesday, April 14, 2009 - Last night when Mark went to go and say goodnight to Elle - she opened up her left eye - as if to say 'I'm ok grandpa!" With her head wrapped in an ace bandage to hold some wires in place - Mark said she looked like a pirate! Lee and I went next to say goodnight to our little "Swell" (Sweet Elle = Swell). She opened just her left eye for us too! When I saw her little eye open - I knew she would be ok (and I think she looks like the karate kid with her ace bandage on her head)! She had started to move around a little bit so the nurses have her arms tied down. The goal of last night was to keep her sedated and calm so her little body can begin the recovery process. She did wonderful last night and this morning during rounds the doctor decided to remove her breathing tube. They removed her tube around 1:00pm and she has been breathing through her nose since then. Around 3:00pm - I was standing over her little crib and she started to move her hands and legs and then before I knew it - both eyes popped open! She just stared at me and I loved every minute of it! After about 15 minutes she realized that her arms are tied down and her side probably hurts where the incision is and she hasn't eaten in 2 days - so she started crying her sweet little hoarse cry. Again, I loved every minute of it - but I finally had to go and get a nurse to administer her some pain medicine to make her a little more comfortable. They suctioned out her nose and after that - Elle calmed down a bit. Elle is doing great and Dr. Mott (one of the cardiologist) told me today that Elle might be moved off of the surgery floor tomorrow! She will either go back down to the NICU or to the 15th floor. The 15th floor is the recovery floor for the cardiac patients. 15 is where you want to be because it is one step closer to going home! I have a feeling though that they are going to send Elle back to the NICU so she can learn how to eat and breathe. She had a feeding tube in for 3 weeks and has never had to coordinate her eating and breathing. She was sucking on her binky for a while today - trying to forget the fact that she is hungry! I am so thankful that she has had such a good day!

Monday, April 13, 2009

Room With a View

April 13, 2009 - Lee and I just went up and saw Elle. No parent should have to see their child in the state we just saw Elle. She is sedated and paralyzed for the next few hours. They will begin to bring her out of sedation tomorrow sometime assuming that everything looks okay with her stats. I can't saw that I am surprised with how she looked - I had prepared myself to see our little baby out cold with wires and tubes coming out of her. Lee and I are so thankful that everything went as planned and she is out of surgery. All in all, Elle looks good and stable. She has one nurse that will be by her side for her time during her stay in the CVICU. I like that ratio - one nurse for every baby. The worst part of the whole CVICU are the monitors that are constantly beeping. She is in good hands - not just the doctors and nurses - but our Lord!

Sew Her Up Doc

Dr. Morales came out about 30 minutes ago to let us know that he is finished! Thank you Lord! He said the surgery went as planned, the only hurdle was placing an arterial blood pressure line. This is a line that monitors her blood pressure via an iv in her wrist. Nothing major, just a couple of stitches. Lisha and I should be able to see our daughter in about an hour. Thank you for your support and please continue to pray for a quick healthy recovery! Lee, Lisha and our Little Elle

Surgery Updates

Monday, April 13, 2009 - 2:45pm - Sophia came and gave us an update - Dr. Morales is sewing in the other side of the shunt. Once finished, they will check for "bleeders" and then insert the chest tube and then close her up. He should be finished in about an hour. We will get to see her in several hours.

Surgery Update

Monday, April 13, 2009 1:30pm - Sophia just came and told us that the surgery is going well. Dr. Morales has sewn in one end of the shunt and is about to begin sewing in the other end of the shunt. They were able to get a line into her arm - most likely by cutting her wrist to get to her vein. They will have to put in a chest tube to drain fluids that will accumulate after surgery. The surgery should be completed within the next 2 hours.

Surgery Update

Monday, April 13, 2009 - 11:00am - Sophia came into the waiting room to give us an update on Elle's progress. They were still working on her for her anesthesia. The anesthesiologist was having trouble getting a line into Elle's vein. She said that they might have to cut her wrist to get to her veins. Every doctor that has worked on her in the last 3 weeks has said that she has tiny veins and it's difficult to put any kind of lines into her. I pray that they are able to get the line into her arm and everything goes smoothly from this point forward

Surgery Day

Monday, April 13, 2009 - Lee and I got to Elle's bedside around 5:30am to spend a few hours with her before surgery. She was supposed to into surgery around 7:30am. Lee got to her bedside first and was holding her when I got there. I was so happy to see that they had taken out her feeding tube and Selly had also removed the tape from her face. She looked like a completely different baby without the feeding tube and tape. She was awake for a majority of the time we spent with her and has figured out her binky and breathing with no problem! Saturday and Sunday were such wonderful days - Elle made so many great strides - I am so proud of her! Hopefully her recovery will be better now that she can breathe better. Vickie was able to come by this morning before they wheeled Elle into surgery and was able to hold her. She's another proud grandmother!! The anesthesiologist came by around 9:00am to get Elle ready to be wheeled up. They took her from my arms and put her in her little bed. She started to cry and Andrea, her day nurse, gave her a warm blanket and a new binky. Elle was a happy camper when she got her binky and held onto it as she was wheeled through the NICU and into the elevators. One of the doctors commented as she was being wheeled out that she sure did look happy. She really did look happy and content! Lee, Vickie, 2 anesthesiologist, Sophia (her charge nurse during surgery), Elle and myself all piled into the elevator and went with her up to the 18th floor. We kissed her goodbye when we got to the surgery floor. I didn't cry all morning, but I started to tear up when we kissed her goodbye. I know in my heart of hearts that she will be fine. It was just tough to say goodbye to her knowing that she is going into surgery. We fully rely on God and He will take care of our little angel during surgery. I pray for the doctors, nurses and Dr. Morales - the surgeon. I pray for their clarity and wisdom as they work on her and fix her heart. I pray for their strength in mind, body and faith. I pray that they think with their heads and hearts. Dr. Hall, the anesthesiologist, will work on her first and get her ready for surgery. Dr. Morales will do his part after Dr. Hall has her stabilized. We will be waiting on the 17th floor and Sophia will give us updates every 2 hours during surgery. The entire procedure should take about 6 hours total with the surgery and anesthesia.
Psalm 33:20 - 22
"We wait in hope for the LORD; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May our unfailing love rest upon us, O Lord, even as we put our hope in you."


Elle Update from Sunday, April 12, 2009 - Happy Easter!! April 12 was supposed to be Elle's actual due date. I think she knew that Easter Sunday was supposed to be the day she was to come into the world, because Elle had a marvelous day ( and so did we)! Our day began with a wonderful sermon at church. I have always loved Easter - the message from church - the true meaning of the day, the excitement of the egg hunt, the glorious amounts of candy, the beautiful new dresses on the ladies and jackets and ties on the gentlemen. It has always seemed that moms tend to tie the bows on the back of their daughter's dresses a little neater and a lot bigger on Easter Sunday! When we got home from church, Lee and I rushed around grabbing our stuff before going up to the hospital. I had to make some emergency corrections to Elle's dress. I had forgotten that Elle's dress had to fit around her PICC line. While I was packing up some stuff in case we needed to stay the night at the hospital, Lee took the stitches out of the strap on Elle's dress. I had to sew a button on the strap in the car so we could maneuver it around her PICC. It turned out great - and I was so pleased with my car ride sewing job. When we got to the hospital, all of the nurses went crazy over out little princess's dress. Lee and Karen got Elle all fixed up while I took care of mom duties. I came back to her bedside to see her perfectly dressed! Way to go Lee and Karen! Her dress was a little big, so Karen had to tape it together in the back. I think Elle really liked being the center of attention - with everyone oohing and ahhing over her. She stayed awake for a majority of the afternoon. Of course, being that it was Easter - Elle's bow had to be a little bigger than usual - special occasions warrant bigger bows. It has a bunny in the middle of it! Karen told us that Elle's surgery had been moved from second case on Monday afternoon to first case. This means that her surgery will take place at 7:30am on Monday morning. Hearing that she had been moved up was such a welcomed relief - finally our little baby will have her heart fixed. We spent the rest of the day with our wonderful family members and our little princess. She had a great day despite throwing up twice. She is fine - the cardiologist came to do an echo cardiogram while she was eating and moved Elle's head to get a clear image on her heart. She moved her head so that it was tilted back - not great positioning for a baby who is eating. We were all watching the monitor and all of a sudden there was a rush of color on the screen. We all looked at Elle to see what was going on - just in time to see almost 58 cc of milk come back up - along with her feeding tube! Karen was so mad at the cardiologist - and so was I! I believe Karen told her to hurry up and finish her job so she could do hers! After the cardiologist left, Karen got Elle situated again, re-inserted her feeding tube (after she threw it up again) and started feeding Elle again. In all the chaos, not one drop of milk got on her precious little dress! Since Elle's surgery was moved up, Lee and I decided to stay here. Finally, at 11:30pm, Selly kicked us out of the NICU. She and Elizabeth told us that they would take care of our baby because we needed to sleep. Surgery day is a huge day - more so for the parents! We left Elle sucking on her pacifier with heavy eye lids - ready to fall asleep. Our baby is in the Lords hands - he will protect her and us during this entire procedure. He already has!!