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!