"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."

PIC Line Update

I received the phone call from the nurse practitioner at 1:00am on Sunday morning regarding Elle's PIC line. She tried to put the line in through Elle's arm and was able to get the line in and up the arm and then somewhere around her collarbone - she wasn't' able to get any further. She then decided to try to use one of the veins in Elle's head. Elle got her first hair cut because they had to shave some of her hair. She reassured me that they saved the hair from her first haircut for us. Again, she found a good vein and was able to get as far as Elle's collarbone before she couldn't get any further. She decided to stop and Elle will be taken to Radiology on Monday so they can put the line in. She said that in cardiac babies - there are often times malformations. It appears that God created Elle a little differently than they expected. The nurse practitioner said that Elle's vitals the whole time were good and she behaved beautifully under the morphine. Of course, it was disappointing to hear that they weren't able to get the line in - but maybe this event is a blessing in disguise. Lee and I were told that the nurses actually prefer the line that radiology will put in because it means they will be able to draw blood from it. Had the other line been put in - the nurses would have had to prick Elle's foot for blood and they don't like sticking the babies. Now we just have to wait for Monday to see what it holds - but first we have to get through Sunday. I know the Great Healer will watch over our baby. I pray for her strength and continued improvement. HE will get us through Sunday and for the rest of the days! Psalm 56:3-4 "When I am afraid, I will trust in you. In God, whose word I will praise, in God I trust; I will not be afraid. What can mortal man do to me?"

Oh What A Day

Our day began with good news at 5:30am. Elle had a good night - she was moving around more than usual and seemed to be trying to open her eyes. She also pooped which was a huge ordeal because Friday was her first day of getting milk every three hours. Her stomach and digestive system seem to be working just fine! During the rounds this morning, the doctors decided that Elle was ready to be moved up on her feeding so they doubled each feeding from 8 cc to 16 cc. 16 cc is about 1 ounce. Lee and I spent the morning with Elle. When we got to her bedside this morning - this is how we found her little feet - holding one of her many wires between her toes! Lee called them her little monkey toes!

I spent the afternoon with Elle while Lee went into work. I'm sure today was tough for him! Thank you to everyone that stopped by today - it was my first day without Lee by my side and your presence made the day absolutely wonderful! Elle made some huge strides today. She figured out how to grasp her wires with both her hands and her feet and she also figured out how to open her mouth for the pacifier. She hasn't figured out the sucking part - but at least she is opening and closing her mouth! The big event happened this evening. Lee and I were able to give her a bath! We sprung this on Lee so he couldn't refuse to help. He walked in from a long day of work to find my mom, dad, Mark, Vickie and myself all standing over Elle's bed. The nurse was kind enough to allow all of us to stay back at Elle's bedside - usually only 4 people are allowed to be at the bedside. Lee had no choice but to jump in and help with all the onlookers we had! I must admit that this was a super nerve wracking event - giving a newborn a bath that is attached to tons of wires! I was so thankful that all the grandparents got to witness the historic event. I believe it was even caught on video! I will have to post that tomorrow. Before Elle's bath - we all were witnesses to the longest eye opening event since her birth! She kept both of them open for several seconds at a time and toyed with us for almost 30 minutes. It was such a great evening for all of us!

Here is Lee helping nurse Jennifer

While all of this was absolutely amazing - please pray for Miss Elle. The Nurse Practitioner came in around 10:30 this evening and was going to put the Pic line in. They will give Elle morphine to knock her out and then attempt to put the line in. If she can't get the line to go in - Elle will be transported to radiology and they will have to put the line in. She is supposed to be calling after the procedure is finished - but its been 2 hours and I still haven't received a phone call. The procedure has to be done in a sterile environment so Lee and I had to leave the unit and they shut down the unit from all other visitors. I'm praying that they aren't' still working on our little one! Once they get the pic line in, Elle will begin receiving her supped up Gatorade and PGE (the medicine that is keeping her heart working) from this line instead of the line that is in her bellybutton. They will remove the lines from her bellybutton and then Lee and I will be able to hold her. I am excited to be able to hold our little one again! Even Lee is ready to hold her - wires and all! Lee and I are so thankful for the events of today and for all of the wonderful love and support from all of our friends and family. We are so blessed to have the amazing suport systems that we do. Thank you - Thank you - Thank you from the bottom of our hearts for all the love and support (and other goodies)! I don't think we will ever be able to express just how grateful we are for each and every one of you.

Eye Spy

Elle had a great day today. She spent the whole day sleeping and having visitors come and ooh and awe over her cuteness! Lee and I made it to the NICU this morning and sat with Elle while the doctors made their rounds. Even with her little episode from last night, they still feel that Elle is making progress. They decided to stop Elle's calcium line. They added the calcium to her nutrient bag that is helping feed her all the good stuff she needs to become strong. They also re-started her feeding tube. When they had moved her air supply from her throat to her nose, they had stopped her feeding tube. Now that she is again intubated - she is being fed 8 ccs of breast milk every 3 hours. We worked on getting her to associate the binky with eating - this is slow going because she is not a fan her binky! We finally made a little progress when we put a drop of breast milk on the tip of the binky. Hopefully, each day will get a little easier for her. She still hasn't opened her eyes for more than a few seconds. This afternoon, she would open one eye a little and then immediately close it. Pray that she opens her eyes soon! The doctors have mentioned her sleepiness a few times, and don't seem to be too concerned but I am starting to get worried. I pray that this weekend she will decide she is ready to see the world. We also learned this afternoon that they will be putting in a pic line tomorrow. Evidently this procedure may take a long time because it is a tedious procedure to make sure it is in correctly. We pray that whoever does the procedure has steady hands and is able to get Elle set up with the line without putting her through too much stress. Our little one is such an angel and we have spent countless hours just staring at her. We pray that tomorrow is another wonderful day!

Lee, Uncle Austan and Elle I love this picture - these big boys lovingly looking over Little Elle!

Milky Minutes

This is a warning - Do not continue to read if the thought of breast milk and all the glories that go along with it gross you out! I'm warning you now!! For those of you that are continuing to read - I seem to find humor in the oddest places! I started being diligent about pumping every 3 hours last night. The milk bank here at TCH is right next to our pod so I can just walk right out and into the milk bank. In the milk bank, they have a room that is strictly for women. It is separated into six different areas separated by curtains. There are warnings posted everywhere that the room is a quiet area - no cell phones - an area for relaxing and pumping. I walked in this morning and was the only one in the room. I headed to my little corner of the room, closed the curtain and proceeded to set up shop. A few minutes later, I heard the door open and another mom walked into the room. Of course - there are 5 empty rooms and she decides to use the area right next to mine. After a few minutes, I began to hear the most disgusting sound I have ever heard. It was a cross between her smacking gum, drinking water and chewing on an apple. It totally grossed me out. I even put my fingers in my ears to stop the sound and I could still hear it! I was emailing Lee the whole time - trying not to throw up because it was really grossing me out. All of a sudden - the smacking sound stopped and then to my total amazement - the lady burped! What?! Are you kidding me? This is supposed to be a peaceful place and my friendly neighbor had decided to eat her breakfast and then expel all her gases! Of course - I am trying to abide by the rules and stay quiet and all I could do was silently shake with laughter. I'm sure I let a few giggles out and she had to of heard me. I finally got over giggles and then all of a sudden - the lady farted! Ah! How much longer do I have to be here??!! Of course - Lee is loving this whole experience as I'm emailing him the minute by minute action. Ok - I only had 5 more minutes - what else could happen? Oh - she farted again! But this time - she said "excuse me." Where was the "excuse me" after the first burp?! Lee was writing me to hurry up and see who the lady was. There was no way I was going to face her - I was silently dying laughing!! My time was up - so I started to quickly clean everything up when I heard her pump stop. I just sat there and waited until I heard her leave - certain I was going to run into her at the sinks outside the room. According to the lactation consultants - you are supposed to clean your "tools" after each use. I took a deep breath and walked to the door - opened it - and there was no one there at the sinks! The lady left without washing her stuff off! Double gross!!! I walked back to all our family members sitting in the waiting room and I was crying I was laughing so hard. Oh! Sometimes a good laugh is all it takes to get the day going!

Lee wants me to put a picture of the first milk on the blog...this is for you babe!

Positivity is Power

I fell asleep last night reading the words written on a bracelet our dear friend Amanda gave me. "Positivity is Power!" Yes indeed it is. Amanda and her hubby Sean came and visited Miss Elle yesterday while they were in the neighborhood. Amanda is probably the strongest person I know and I just know that some of her strength rubbed off on Elle and me yesterday! Elle had a wonderful day until about 10:00pm! Lee and I got to the NICU around 8:00am and first thing we noticed was Little Miss Priss opened one of her eyes! She opened it for a second and then instantly closed it - kind of like she was playing peek-a-boo with us. Too bad she didn't enjoy the game long enough for us to see what her little eyes look like! She isn't on any sort of sedative so she is truly a sleeping beauty. She has slept since her arrival in the NICU at 9:00pm on Monday. She didn't even need sedation when she went in for the MRI. At 9:00am yesterday we met with the Neurologist. Both her MRI and EEG from Wednesday came back abnormal. The lead doctor, Dr. Fernandez, did his best to explain to us the situation. Her MRI showed bleeding on her brain - but not the type of bleeding that is associated with seizures. He said it might have been a side effect from birth. The EEG was also abnormal. While they were doing the EEG, Elle had one of her "episodes." It looks like she is throwing a hissy fit. For those of you that have seen me throw a hissy fit - Elle does the exact same thing. She clinches her fists and starts shaking a little and I'm sure if she could - she would stomp her foot just like me. They were initially worried that each of these episodes were seizures. However, the EEG showed that these little episodes aren't associated with epileptic tendencies. The neurologist felt that while both test came back abnormal - they didn't feel that she was or is having seizures. They want to run another EEG in a few weeks. This was the news the cardiac team needed to hear to begin planning Elle's surgery. Cardiac had to have the ok from Neuro so they can give Elle heprin during the surgery. Neuro gave their ok and Elle's case will be presented on Monday to plan the surgery. After the neurology team came and talked with us, the nurse told us the wonderful news that I would be able to hold Elle - wires and all! It was the most amazing experience and one I hope I never forget! Lifting her out of bed for that little bit showed us just how much hair our little one has!

The wires made Lee a little too nervous so he elected to wait for his chance to hold little miss. After getting to hold her - it was my turn to change her diaper.

I tried to sneak out and use the excuse that I had to go pump - but that didn't fly with Laura the nurse. She caught me and stayed by my side as I changed her diaper for the first time. Lee stayed far far away taking pictures of the historic event. Yesterday was another first for Miss Elle - she started a feeding tube. We also tried to get her to start on a pacifier - but she really didn't want anything to do with that.

After the feeding tube was put in and Elle was resting back in her little bed - she started to open her eyes - more so than in the morning. We still can't determine what color her eyes are because she didn't keep them open for very long - but it was so exciting to see her at least try to open her eyes! Later on that afternoon Elle was extabated - they moved her breathing tube from her throat to her nose. Evidently this was an awesome step for Elle and her breathing. I didn't particularly like it because the tubes covered up her entire face. At least when the tubes were down her throat - we could see her face. With the tubes out of her throat - she started trying to cry. It was the sweetest sound - a hoarse cry. I absolutely loved it! The afternoon was filled with visitors that kept a constant stream next to her bedside. At 10:00pm last night, Lee, Vickie and I were about to walk back into the NICU to go and say goodnight to our little angel. We pushed the button to have them open the door to the NICU and as soon as we did - the alarm started going off that there was an emergency in the B pod - which is where Elle is. I had that sinking feeling that it was our daughter causing all the drama. Sure enough, a few minutes later, the doors opened and my cousin walked out and gave us the news. Elle's oxygen levels had dropped. Her feet started to tun blue, her hands turned blue and her lips had turned blue. The nurse called the doctor and they had to bag her to keep her breathing. She was without oxygen for about 30 seconds - maybe a minute according to the doctor that worked on her. When Lee, Vickie and I walked around the corner and into Elle's area - she was surrounded by a team of 10 doctors. What a nerve-wracking sight to see your little daughter surrounded by a team of doctors - knowing that they just saved her life. She was resting peacefully when we got to her bedside and she looked so much more comfortable than she had with the tubes down her nose. We waited until they had run her blood gas to leave. Everything looked good - so around 11:30pm - we left the NICU. It was such an emotional day - filled with extreme highs and the extreme low. Even through all of this - crying and worrying about her well being - there is still that comfort of knowing that Elle is being taken care of. Not only by the wonderful doctors and nurses but by the Great Healer. He has a plan for our little one that only He knows! We will trust in Him completely!

Wires, MRIs and New Sheets

Today was filled with mixed emotions. I called the nurses station at 3:00am to check on our little miss. The nurse told me that Elle's calcium level had dropped severely. They had to start her on a calcium drip and then they also had to pump her up with some magnesium too. Not the news a new mom wants to hear at 3:00am! The nurse reassured me that she was stable and her levels were under control. Lee and I spent the rest of a very unrestful night thinking of our little one and we headed to the NICU bright and early this morning. We wanted to be there for the rounds of the doctors so we could talk to them about Elle's calcium levels and about the MRI she was scheduled to have. We spent the morning with our precious little angel - I spent it trying to spike her hair up and taking bed head pictures!

A few minutes before the doctors were supposed to come to Elle's corner of the NICU - the cardiologist got paged for an emergency and had to leave. The doctors won't continue rounds without the full team - so we didn't get a chance to talk to the whole team. We were able to talk to one of the other cardiologist and the resident that are in charge of Elle. No "new" news from them - just a re-cap of the calcium problem and findings from the echo from Monday night. The next step in our day was the MRI. We've seen little Elle in her bed surrounded by all these wires for 3 days now...but when they started pulling out the wires and moving them to the transport bed - I lost it. She is such a little girl and attached to so many wires. The nurses kept moving the wires - one by one and then when they had the transport bed ready for her - they moved our little one into the bed. Lee and I walked with the nurse to radiology and sat with her while they got the MRI machine ready for our special girl. It was so hard to give Elle that final kiss and then walk out of radiology. We had the option of staying and watching the MRI - but neither Lee nor I could do it. We spent the next hour checking into the hotel and catching up with the most wonderful visitors - The Rosses. They totally made our day with their surprise visit and it was just what the doctor ordered to get our mind off of Elle's MRI. I don't think they will ever realize just how special their visit was for us today. We were able to take them down to see her in the NICU and much to our surprise - while Elle was getting her MRI - her nurse was making her bed "girly!"

Check out those cool pink sheets!

While we were escorting the Rosses out - we ran into another surprise visitor - Annalee and Adelaide! What a wonderful afternoon to be surrounded by wonderful visitors! Our excitement about the afternoon was short lived. While we were with Elle later on this afternoon, her nurse made the comment that she had ordered an EEG because Elle was shaking and sucking on her lips - signs of more seizures. We will find out the results of the MRI and EEG tomorrow. They will be able to tell us if Elle has problems in her brain that are causing the episodes. I don't want to call them seizures because we aren't sure if they even are seizures! I'm praying that Elle is just like me and shakes when she is cold and sucks on her lip when she is nervous!! We spent the evening with our wonderful families and had a "real" sit down meal at a "real" restaurant. Tomorrow is a new day and will hopefully be filled with good news from the neurologists and from the cardiologist. We should find out soon what the plans are for fixing Elle's heart. From what the cardiologist said this morning - they are leaning towards putting in a BT Shunt. Whether they go in from the ribs or actually put Elle on a by-pass machine and open up her chest is yet to be decided. They will make that decision after hearing from the neurologist. While all of this is so tough to go through - we are guided by a power so much stronger than us. Annalee brought us some wonderful scriptures from one of her dear friends and they all sum up exactly how Lee and I are feeling - joyous in the Lord and completely trusting in his plans for our family.

Hebrews 11:1

Now faith is being sure of what we hope for and certain of what we do not see.

Philippians 4: 6-7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Jesus Christ.

Day Two!

Our little miss spent the entire day sleeping. Don't I wish I could have done that?! The medicine they gave her last night for the seizure knocked her out all the way through today. I was able to see her around 11:00am this morning for the first time since delivery.

I fell in love all over again! She is such a little angel - and I think she looks like her daddy!

She has the cutest hairstyle right now - a full tuft of hair smack dab in the middle of her head!

I tried to put a bow in it this afternoon - but her hair is too fine to hold the bow. Oh well - at least I tried with the first of many fashion accessories! Every update we got from the doctor today involved some version of good news. She had the echo done last night and Lee received a phone call this evening from the cardiologist letting us know that the echo pretty much showed the same thing as our last ultrasound with the cardiologist here at TCH. This was good news because it meant things hadn't gotten worse! She has pulmonary stenosis approaching pulmonary atresia which means that her pulmonary valve is very restricted - almost not allowing blood to flow through it to the pulmonary artery and into the lungs. She also has a ventricle septal defect which is a hole in between the two ventricles caused by the restricted pulmonary valve. She is still on the medicine that keeps her pda valve open and is allowing blood flow into her lungs. They did an ultrasound on both her kidneys and her brain this morning. Both ultrasounds came back clear. Her kidneys are functioning well and her brain isn't bleeding. The doctors were worried that she had bleeding on her brain which caused the seizure. To further narrow down the cause of the seizure - the doctors will be performing a MRI tomorrow morning at 11:30am. We're not sure exactly what they are hoping to find out from the MRI - but we are praying that everything comes back with an all clear from the doctors! We finished off the day with a visit from Uncle Benny. There are too many cute nurses to keep him away!

Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." We have so much to be thankful for and are so blessed by our little girl. We pray for a wonderful Wednesday and a day that is filled with an overflow of hope by the power of the Holy Spirit!

A Blessed Day

March 23, 2009 - our exciting day began at 3:45 am. My water broke and the excitement began. Lee and I took our time getting our things together and headed for St. Lukes around 4:45am. By 6:00am we were in a room and the doctor on call came in to check on me. I wasn't having contractions - well - actually I was but had no idea! By 8:00am they had started me on pitocin and then it was just a waiting came for the rest of the day. At noon they started the epidural and it was all good from there. I couldn't feel a thing so I spent the rest of the day watching movies and resting. At 7:21pm - our wonderful doctor, Dr. Reiter, came in and made the big announcement - this baby was coming in 30 minutes. What? I couldn't feel a thing and here the doctor was saying I was ready to go! After a few big pushes Eleanor Crosby Lupher was born at 7:34pm weighing in at 6 pounds, 7 ounces and 19 inches long. I was so worried I wasn't going to be able to see her or hear her cry - but as soon as she came out - Dr. Reiter laid her on my stomach and it was absolutely the most amazing experience. There was our daughter! Lee was such a trooper during the whole delivery and stayed right by my side and was the perfect cheerleader. Elle started crying the most perfect little whimper and of course - I was crying right along with her. After a few minutes - the Texas Children's nurses took her out of the room and got her cleaned up and stabilized. Meanwhile - I wouldn't let Lee leave my side because my doctor was still working on me. An hour later - Dr. Reiter was finished with me and the TCH nurses were finished with Elle. They wheeled her back in so I could see her before taking her over to TCH. There she was - our little miracle! Lee went with her to TCH while I was able to call some of our family members back to the room to let them know she had arrived and was doing ok. A little later in the evening, Lee was able to take everyone back over to TCH to see little Elle. I'm sure it was love at first sight for everyone! The day was truly a whirlwind but Lee and I felt so blessed that it all went ok. At 11:40pm - one of the Neotatologist came to our room and filled us in on Elle's progress - or lack there of. She had been stable when the family saw her and then she had taken a turn for the worse. She started having seizures and began to turn blue - this is what they call a Tet Spell. They didn't know if the seizures were caused by the medicine they had given her or what. Lee went with the neotatologist up to the NICU while I was confined to my bed - crying. Lee came back and said she was fine they just had her sedated. It's amazing how things can go from joyous to worrisome in just a matter of minutes. At 2:40am - they finally moved me from the labor and delivery floor to the maternity floor. They kept me on the labor and delivery floor for so long because of the massive amount of work the doctor had to do on me after delivery. I was still on the epidural and they were still having to check me for bleeding. It was such a long day and night! Lee and I didn't sleep very well - being woken up every few minutes to check vitals and all that good stuff. We called the NICU at 3:00am and they reported that Elle was stable and doing fine. Lee went and saw her this morning and said she looked good - but they still have her sedated. At 10:00am this morning - they finally took the epidural out and gave me the ok to get dressed and begin to move around. I have been confined to the bed since noon yesterday! This news was absolutely what I needed to hear! So - in the next hour or so - I am going to go and see our daughter for the first time since delivery and I am so excited! We are praying that each day gives Elle more strength than the day before. We pray for the doctors and their wisdom. We pray for peace and strength for Lee and me and the rest of our family members. We pray that the Great Healer will lay his wonderful hand on our little girl and protect her and guard her. We know that through God all things are possible!

What's In a Name

When we found out we were pregnant, we knew that we wanted to find out the sex of the baby. I was certain we were having a boy. We had the name picked out and we were ready to start planning for a little boy. Imagine my surprise when the doctor said "it's a girl!" From that day to now (2 weeks away from delivery) - Lee and I don't have a name for our little one. She is currently known as Little Lady Lupher and I have actually become accustomed to referring to her as Little Lady. Lee calls her Zula Lula Lupher. Everyone seems to have an opinion on what they want our little one to be called. We've heard everything from Consuela to Lisha Jr. I'm sure everyone thinks that we have the name set and ready to go and we are just keeping it a secret - but really - we have no idea what we are going to name her. Our list of names keeps getting longer and the time we have to choose a name keeps getting shorter! Lee is convinced that I will be so out of it after delivery that he will get to name the baby. I'm not so sure about that. I wonder how long we have to decide on a name after she is born?

Losing Control

For the past 4 months, my super brave brother in law and sister in law have been fighting a battle that no youg parent should have to go through. Their litte one, Witt, was born with a chromosomal disorder and his first four months of life have been plagued with various illnesses. He was diagnosed a few days ago with Pulmonary Hypertension...and then yesterday, it was discovered that he is aspirating when he swallows which means that everything is going into his little lungs. He had to have a feeding tube put in and I know my SIL is in pain. Not only to see her little one attached to all these machines but to also know that she can't feed him. I'm not a mom yet so I don't know the exact feeling she is going through - but it must be rough - to have that little bit of control taken away and not to know when the next time she will be able to feed him again. The doctors are doing everything they can for Witt - but what about her? I'm praying that SHE finds the strength to hold on and be strong during all of this. The easy thing to do would be to say "enough" - I can't do this anymore. It takes a strong and different kind of person to persevere and with the help of the Lord, I know both she and my BIL will make it through this very trying time.

Blog Envy

I have blog envy. I see all these beautiful (literally - they are beautiful) blogs and I just have to wonder how these people do it?! I want a pretty blog! Better yet - I want to learn how to create a pretty blog. That would be fantastic! Maybe one day...