Tuesday, March 31, 2009
Monday, March 30, 2009
Sunday, March 29, 2009
Saturday, March 28, 2009
Friday, March 27, 2009
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.
Wednesday, March 25, 2009
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.
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.
Tuesday, March 24, 2009
I fell in love all over again! She is such a little angel - and I think she looks like her daddy!
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!