Update on Surgery

Thursday, April 2, 2009 - I called the nurse around 4:00am to check on Elle. She said that Elle's white blood cell count was high which might be an indication of infection. The doctors decided to start her on antibiotics immediately to stop any infection before it gets bad. They also gave her more morphine to sedate her because as she started to wake up it was obvious she was in pain - her blood pressure began to get high again. We have to wait 24 to 48 hours to know the results of the blood cultures the nurse sent yesterday to see if there is an infection. We don't know what this will do for surgery for today. We haven't met with the doctors yet which leads me to think that they are going to wait and see if our little one is 100% before they do. Our little Elle is starting to wake up a little bit - she is grasping our hands and moving her arms a little bit. I pray for the Lord to give us strength today - no matter what happens. I pray that he takes our little one into the palm of his hand and protects her and comforts her as only He can. Isaiah 41:10 "Don't you be afraid, for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness."

A Roller Coaster of Emotions

Wednesday, April 1, 2009 - Today was the best morning followed by the worst afternoon. We spent the morning with our little princess - watching her move around and open both eyes. She figured our her pacifier which Lee and I thought was the most amazing sight ever.

She came back from getting the PICC line around noon. She was sedated so Lee and I sat next to her bed and watched our little princess sleep. My parents were also with us. I can't remember all the events of the afternoon because it was the worst afternoon yet and I was in tears for a majority of it. Evidently when Elle returned from Radiology - she didn't get an x-ray to ensure that her breathing tubes were in the correct place. Her heart rate started to drop and so did her oxygen levels. I sat there in disbelief with my parents and my husband as the doctors and nurses stabilized her. They ran an x-ray and it showed that the tube had slipped down - so they decided to move it up slightly. After moving the tube, Elle was stabilized and the doctors felt confident she would be ok. A little while later, her stats started to drop again. Somewhere in all the mess, Elle's lung collapsed. The doctors ran more x-rays and it showed that the lung had collapsed so they bagged her to pump it back up. That did the trick and she was once again stabilized. The nurse went to go and suction Elle's mouth because she had a lot of spit coming out of her mouth - she suctioned little Elle and suddenly we heard a gurgling sound. I was sitting at her bedside and instantly knew something was wrong. I pushed my chair across the NICU and turned my back to my daughter's bed as a team of cardiologist, neonatologist and nurses began to work on her. I could hear the monitors going crazy - over all the noise the last thing I heard was "bag her bag her" and then my dad escorted my mom and me out of the NICU. Lee stayed behind to be with our little angel. It seemed like we were out in the waiting room for an eternity. I finally said it had been too long - something was wrong - so my dad went into the NICU to see what was going on. He came back out and said that Elle had been stabilized and was ok. The only thing I could do was praise God that my little girl was still alive. At about this time, the new Resident, Dr. Davis, came out and told me that everything was fine. She was so nice and spent so much time comforting me in the waiting room. She explained what happened and told me it was ok to go back in. I walked in to see my little one sedated on her little bed - breathing with the help of a new breathing tube. Lee had stayed with our daughter the entire time and he said it was the worst thing he has ever seen but he didn't want to leave our baby alone. Elle's levels had dropped to dangerous level as I was being escorted out of the NICU. The doctors had to remove her breathing tube and reinsert it to keep Elle breathing. After everything had calmed down and I was back in the NICU, the doctors told us that her breathing tube had caused all the problems. It was too low when she got back from radiology causing everything to be thrown off. It was an absolutely horrible afternoon and it all happened so suddenly. Our morning had been fantastic and then the doctors had to save our baby's life. The doctors had decided to sedate Elle to bring her heart rate down -so she spent the rest of the afternoon/evening sedated. She finally started to come out of the sedation around 10:00pm. She opened both eyes and I just stood over her bed, holding her little hands and talking to my little princess. Lee had to take a break from the NICU and spent a majority of the evening in the waiting room surrounded by family members. My husband is the strongest man I know. I don't know how he sat back there and watched as the doctors worked on Elle. Even Dr. Davis said she was impressed by how he reacted to such a traumatic event. They usually ask family to leave when a baby stops breathing - but they let Lee stay. I am so thankful for the doctors and nurses that worked on little Elle today. I am so thankful for Lee for staying with our baby. I am so thankful that my parents were there to comfort me - for my dad's shoulder that I cried on all afternoon and for my mom that rubbed my shoulders. I am so thankful that the Holy Spirit is watching over our daughter HE allowed Elle to live and brought peace over Lee and myself. I pray that he gives us all strength and peace tomorrow. Even though Elle had a horrible afternoon, the cardiologist are telling us that she is still scheduled for surgery tomorrow. Lee and I have to be at the hospital before 7:00am to discuss the procedure with the cardiologist that will be doing the surgery. The nurse tonight had one more test to run to ensure Elle is ok for surgery. I am about to call to make sure everything is still on for tomorrow. They still haven't given us a definite time on the surgery - it could happen anytime from 9:00am to 4:00pm. Please pray for our little Elle tomorrow during surgery.

PICin'

Tuesday, April 1, 2009 - This morning, Lee and I made the trek from Cypress to TCH at 5:00am. We wanted to be here early in case they decided to do the PIC at 7:00am. When we got here, Elle was the most active she has been since her birth. Both her eyes were open and in the 3 hours we spent with her - she mastered her pacifier. It was too cute to watch her - she would suck for a few seconds and then stop and then suck for a few seconds and then stop. Lee and I took turns holding it in her mouth - she did so good! At 8:45am this morning, the CV Anesthesiologist came down to talk to us. He explained the procedure - once they had Elle sedated, they were going to look for good veins using the x-ray machine and then insert the IV into her vein and use the x-ray to follow her vein to right above her heart. They were hoping to find good veins in her arms to use - and then last resort would be to go in through her leg. The CV Anesthesiologist was an incredibly nice man and put Lee and me to ease. At 9:30am - the CV Anesthesiologist and a nurse came down to get her. They unhooked all her machines and then re-hooked her back up to machines that they could take with them to Radiology. It was easier to watch them transfer all the wires this time than it was the first time we watched them unhook her for the MRI. The only tough part was watching them put the bag on her little face and then watch the Anesthesiologist continuously pump it while we traveled from the 4th floor to the 1st floor. We got to Radiology and they took her inside and hooked her up while Lee and I watched. We were able to give her a kiss and then we had to leave. They said it would take about an hour - so Lee and I are hanging out in the Ronald McDonald House until she gets back. The Ronald McDonald house is now affectionately known as the Ro Ho - I'm sure if I referred to it as the Ro Ho to anyone outside of the hospital - they would think I am crazy! I just called down to the NICU and she isn't back yet. Dear Lord, please protect our little girl. Earlier today, Mary the Cardiologist (I feel awkward referring to her by her first name - but I have no idea what her last name is!) told us that Elle is tentatively scheduled to be the second operation tomorrow. We will be meeting with Dr. Morales, the Cardiologist that will be doing the surgery at 9:00am tomorrow morning to discuss what will be happening. Pray without ceasing!

"Elle"gant Surroundings

Tuesday, March 31, 2009 - Miss Elle slept for a majority of the day today. She woke up when the neurologist was messing with her - and once she finally calmed down - she fell back asleep. I wasn't able to get her fit on camera, but I did take a picture when she was not a happy camper. She woke up again when I asked her nurse to change the tape that is holding her breathing tube in place. Miss Priss made the discovery that her little fingers would fit under the tape and she conveniently began to pull the tape from her face. The nurse and Respiration Therapist were able to fix the tape and get it looking like new. I can't wait for the breathing tube to come out of her mouth. Sometimes it looks like the corner of her little mouth is being stretched so far. I hate it! I'm not too thrilled about the tube going down her nose either. Bright and early tomorrow morning, Elle will be going down to radiology for the PIC line. They are going to stop feeding her at 3:00am and she should have the procedure 4 to 6 hours from then. At least that is what they are telling us...I will believe it when they wheel her down to radiology. Lee and I decided to come home for tonight and go back early in the morning before the procedure. While it was super convenient to just walk out of the hotel and right into Texas Children's - we both needed to come home tonight and see our dogs! I think they have been spoiled by Grandpa David because they both look fatter than usual! Speaking of fatter - the Neonatologist upped Elle's feeding to 28cc every 3 hours today. While we are here at home - I wanted to post some pictures of Elle's home - She definitely has the pinkest crib on the block! My sister in law, Melanie, made some great signs for Elle's bed. Her

name is in bright pink above her crib and there are scriptures around the bottom. You can't help but smile when you see all the scriptures and then look at the little angel in the crib. I brought home all the stuffed animals everyone has given Elle and will wash them so they too can join her in her little corner of the NICU. Tomorrow is going to be a big day for us. Once Elle gets the PIC in - Lee and I will be able to hold Elle without the fear of pulling out her bellybutton IV. Lee hasn't held our little baby yet - but he has promised all the nurses that once the PIC goes it - he will definitely hold her. Tomorrow is also one day closer to surgery. According to Mary the Cardiologist - the incision on Elle will be about 3 inches long and will be on her side. They will go in through her ribs and put in the BT Shunt to help her heart pump blood to the lungs. We will find out more about the procedure tomorrow. Please pray for our little angel. Pray that God's will be done! Pray that everything goes according to plan with putting in the PIC and then for the procedure to take place on Thursday. Pray that Elle is strong enough for both procedures. Pray for strength and peace for Lee and myself as we entrust the doctors with her life. Pray for the doctors and nurses - that they will take care of our baby in the best manner possible.

Romans 5:1-5

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit,whom he has given us."

Surgery Update

No surgery today! When Lee and I got to the NICU this morning, we met with Mary - one of the cardiologist. She said that they hadn't talked to Neurology yet - so Elle was bumped from the surgery line today. Lee left for work and shortly afterward Neurology came to visit Elle. It's actually really funny when the doctors come to visit - because it's not just one or two of them - it's a herd. Usually it is a group of young doctors following around an older doctor. You can definitely tell who is in charge! I met with the same Neurologist that Lee and I met with last week. They asked how Elle was doing and if she had made any progress since the last time they came by. I told them that she had started to open her eyes and was moving her arms a lot more and she has started to hang onto her wires - we've had to stop her a few times from pulling out her feeding tube and from pulling off her heart monitors. Dr. Fernandez, the main man in charge, proceeded to check Elle's reflexes. He tapped on her little legs and arms to see what her reaction was. She did not like ANY of it! She got so mad - opened her eyes and started to silently scream in frustration. Little tears were forming on the sides of her eyes - it was pitiful! He woke her up! All the neurologist were loving every minute of it - I don't know how many times the entire herd crowded around her bed and were smiling over our little one. They were so pleased with the way she reacted - pretty much like a "normal" baby would react. Their only concern from the exam this morning is her leg reaction. She doesn't quite have the same reaction in her feet and legs as she does in her arms. She keeps her legs tucked up to her belly - pretty much the same way she did in utero. They measured her head and it is average - average is good! Dr. Fernandez then told me that pretty much everything appears to be the same since their last exam - they are pleased she has started to wake up. As far as the seizures and posturing - they still feel that while the MRI showed bleeding in her ventricles and the EEG showed abnormal tendencies - neither the MRI nor the EEG show what appear to be epileptic tendencies. They will want to follow her progress though because there could be developmental issues but it is just too early to tell. After their exam, Neurology once again gave their ok for Elle to have surgery. I asked when PT and OT could get involved and our new cardiologist, Dr. Crystal, said that once her incision heals from the BT Shunt being put it - he would be more than happy to get PT and OT involved in her development. He also told me to stay on top of requests like that because doctors have tunnel vision - they each only focus on their area of expertise and have a tendency to forget about the other areas - like PT and OT. Mary, the cardiologist also gave us more of a definite answer on the PIC line and the surgery. Elle will have the Interventional (IR) PIC (peripherally inserted central catheter) put in tomorrow sometime. They will take her down to Radiology, a CV Anesthesiologist will sedate her, and a Interventional radiologist will insert the PIC. The line will be inserted into one of her veins with the help of a Fluoroscopy (like an x-ray for the veins that is continuous so the Radiologist can follow the vein - it is the same type of machine they use for upper GI's). Once the PIC is put in place, they will be able to remove the IV that is in her bellybutton. She will begin getting her PGE to help her heart pump, her supped up Gatorade filled with nutrients and lipids (fats) all through the new line. The nurses will also be able to draw blood from this line so they won't have to stick little Elle in her heels for blood samples. Right now, Elle is also scheduled to have surgery on Thursday. They don't have a definite time yet - but according to Mary - Thursday is the day. While I was talking with Dr. Crystal about what neurology saw and Elle's procedure he asked if I had a background in medicine. I laughed and told him no - it is actually in employment law and human resources. Many thanks to all our nurse friends that keep us asking all the right questions that it would lead our doctor to ask if I had a background in medicine!

Elle "Left Eye" Lupher

Monday, March 30, 2009 - When Lee and I got to the NICU this morning - this is what we found our sweet little girl doing...cuddling with her pacifier! It's orange - so it might be hard to see in the picture - but it was such an adorable sight to see! Lee left for work after saying good morning to Miss Elle. Shortly after Lee left, I met with the new cardiologist for this month. He discussed Elle's surgery with me - but was pretty vague about it. His main concern is meeting with Neurology again before they set her surgery up. He said he was worried about her shaking episodes and posturing - fearing that they might be seizures. He was supposed to get with Neurology today - but I don't think that happened. Between the cardiac team coming to Elle's bedside and the next round of doctors coming by - Elle was visited by her favorite "voice." Every Sunday from the time I was 6 months pregnant - I would experience full belly movement in church. Our Pastor, Pastor Lance, would start talking and Elle would go crazy. She wouldn't stop moving until the music started. I loved every minute of it! Pastor Lance came by and it was such a blessing to have him there with Lee's grandparents. It was comforting to hear that familiar voice again praying for our little girl and for us - and I'm sure Elle recognized it - although she slept through his visit. The Neonatologists then came by and decided to increase Elle's feedings from 24 cc to 28 cc. She's growing! Our day nurse today, Claire, was wonderful. Her whole goal today was to let me hold Elle as much as possible. I was able to hold her for over 2 hours today and it was so special!

Elle in my arms

We even got some eye action today! Her new nickname is Elle "Left Eye" Lupher because she loves to keep her left eye open and only occasionally will she open her right eye. Her right side it still a little swollen and her tubes are all on that side of her mouth - so I'm sure it is awkward for her to open up that little eye! Today was the most eye opening we have had so far and Miss Elle is figuring out the world around her - her little hands are going constantly and she has also discovered her pacifier. It was such a wonderful day with her! Lee came back to the NICU after work and we enjoyed a wonderful dinner with my parents, Lee's parents and his brothers. It was so good to be surrounded by wonderful family members - eating in the Ronald McDonald House - it's a mini escape from reality. When we got back to the NICU, our night nurse, Andrea, laid the big news of the day on us. Elle might be having surgery tomorrow. There were some openings for surgery and Elle is on the list - along with three other candidates. If they can get the ok from Neurology - our little one might be having the BT Shunt procedure sometime tomorrow. It could happen at 9:00am or it could happen in the afternoon. I don't think doctors recognize specific hours in the day - to them its just a number. If Andrea hears anything tonight she is going to call us - so both Lee and I have our phones on loud and right next to us. Walking back to the hotel after leaving our baby, I was in tears. I guess the shock of hearing that the surgery may actually happen tomorrow hit me like a ton of bricks. During surgery they will also be putting in a line in her leg so she wouldn't have to have the PIC put in. I told Lee I was scared and his response comforted me in so many ways - simply put - give it up to the Lord....just pray about it! Just one of the reasons why I love my husband.

Psalm 56:3 -4

"In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?"

Proverbs 3:5-8

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Be not wise in your own eyes; fear the Lord, and turn away from evil. It will be healing to your flesh and refreshment to your bones."

Let Me See Those Peepers!

Sunday, March 29, 2009 - After receiving the phone call this morning from the nurse practitioner about the PIC line - we didn't know what to expect this morning. We got to the NICU and found our little girl sleeping peacefully. She definitely did receive a hair cut - it puts a new twist on the term "high and tight." Lee wouldn't let me take a picture of her new hair cut because it's only on one side of her head - and truth be told - I am ok with that. She's still a perfect little angel. The nurse this morning, Estrella, gave me a piece of tape with Elle's hair attached to it. It's more like fuzz attached to it. After rounds this morning, Estrella told us that they were increasing Elle's feeding from 16cc to 24cc. This is awesome! It's almost 1.5 ounces per feeding. The day was relatively uneventful - which I was so thankful for. One of the highlights of the day was visiting with my friends Jessica and Amber. Jessica brought her video camera - and we might have caught Elle opening her eyes on camera! Jess will have to let me know - and if possible - I will try to post it to the blog. Little Miss Priss is starting to move around a lot more - especially her arms. Her little hands are constantly going and her facial expressions keep me glued to her bedside. She is opening her eyes more and more every day. Right now - her eyes look to be dark dark gray - almost black. Who knows though! We talked to the doctor today about putting in the PIC line and it appears that there is no definite on when radiology will be able to put it in. I was hoping sooner rather than later so Lee and I can hold her. We also received a visit from Carmen, the cardiac surgery nurse. She reassured us that Elle is on their radar for surgery to put the BT Shunt in - but again, there is no definite on when it will happen. She said it may or may not happen next week. Again, I'm praying for surgery sooner rather than later so Elle can begin the healing process. Although - the longer they put it off - the bigger she will be and the "easier" the surgery will be. God will know when Elle's little body is ready and he will direct the surgeons. Today the nurses were able to remove a few of the ivs that were in Elle. She now only has 1 iv going into her bellybutton. Since today is church day - Elle wore her "church bow." Thank you Annalee!! Nurse Estrella also changed Elle's sheets. She is now sleeping soundly on hot pink sheets that are covered with angels. They might be fairies - but I would prefer to think she is being surrounded by angels!

Her haircut is on the other side of her head!

On a different note, please pray for my wonderful hubby. We think he is suffering from a bout with food poisoning. I hate that he isn't feeling good. I wish I could take away his pain just like I wish I could take away Elle's pain and make them both whole! I keep going to one of my favorite verses for strength during this entire ordeal (including Lee's food poisoning)...

Romans 12:11-12

"Never be lacking in zeal, but keep your spiritual fervor serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer."