We have so many things to praise God for! First and foremost, our little girl is making leaps and bounds in her improvement. We went to the hospital to visit her last night and they have completely taken her off the morphine. They still give her a little shot of it right before they change her dressings, but she no longer gets a continual dose throughout the day. This makes her much more alert and last night she was awake and acting like a wriggly baby.
Ella has a hearty appetite and is able to digest 18 cc’s an hour through her feeding tube. This was the goal, so on Monday they plan to start trying her on a special bottle called the Haberman feeder. Apparently this has a very soft nipple that will have the least impact on her gums and lips. We just pray that she doesn’t have too many blisters develop through using this bottle.
Ella is maintaining her own body temperature, which is wonderful! And she is fully breathing on her own with no assistance. They do have some humidity running into her incubator just to keep her airways moist.
We are also very thankful that Ella has a great group of nurses working on her. They talk to her and play with her, which makes Mama very happy. They even put little toys in her incubator for her to look at. They put this plastic aquarium thing in her incubator and she loves it! She will stare at all the moving frogs and monkeys, completely encompassed in them.
Ella loves hearing our voices and responds when we talk. My mom (GiGi – Grandma Gale) was singing “Jesus Loves me” to her and Ella couldn’t take her eyes off GiGi. She loved the music. Whenever her Daddy talks to her she always turns her head and stares at him. Of course Joe completely melts when he looks into those big blue eyes.
In all of our ultrasound pictures Ella would be sucking on her fingers. Well, last night she was trying so hard to suck on her fingers, but she couldn’t because they were all wrapped in gauze. She would try for a little bit, then let out a cry out of sheer frustration. Poor girl! As a former thumb sucker I understand her frustration. They can’t give her a pacifier because it could create blisters, but the poor girl is trying everything she can to suck her thumb.
On a personal note, I (Katie) got my staples out yesterday morning, so that makes me much more comfortable! I feel like a new person!
Joe and I are remaining realistic about the future. We have a very long road ahead of us and there will definitely be times of struggle, but for now we are so thankful to have a baby that is defying the Dr.’s original thoughts. We were talking to her primary Dr. the other day and thanked him for his work. He said, “I haven’t done anything. She’s doing all of this on her own.” We know that it is the prayers of all of you that have gotten her this far, and we are eternally grateful for that. The abundance of love that has been shown to Joe and I is so overwhelming! There is no way we can ever express our gratitude. Thank you all so much!
Some prayer requests for this weekend:
1) Joe went to the hospital and assisted in her dressing changes this morning. He wanted to go and get a “lay of the land” before I did, that way he could prepare me for what is in store. Her most affected areas which need the most care are her little legs (her left one in particular). Visually, it looks really sore and hurting, but the nurses expressed that the wounds are healing much better than prior. Also, her left calf muscle is undeveloped and needs to be stimulated to grow. Possibly, over time, the muscle will come back, but we don’t know how that is going to affect things in the future. Please pray for continual healing for Ella’s legs! Her hands look terrific, yet please pray for them as well.
2) Please pray that she won’t get too many blisters in her mouth from the bottle feeding.
3) Joe and I have a “family meeting” with the primary Dr. and the Dermatologist on Monday. Hopefully this will give us an insight into the next biopsy and how much longer she will need to stay in the hospital. Please pray that Joe and I ask the right questions and that this meeting goes well.
Saturday, June 30, 2007
Thursday, June 28, 2007
Joella is a week old today!
Today was a good day!
Joella's wound care specialist reported that her main blisters on her legs were healing pretty well. She is breathing without the aid of a breathing tube, and her digestive system is taking Mom's breastmilk fantastically although still through a feeding tube that is put up through her nostril and right down into her gut (amazing how that works, I know!).
The main attending physician said that he expects to remove her feeding tube in the next day or two, so that Joella can begin receiving breastmilk via a special soft nipple.
Both Katie and I got to hold her and rock her in a chair. It was so much fun! (these pics will be posted shortly).
Some prayer requests:
-For Joella to receive the nipple without causing any blisters in her mouth or esaphogus. The doctors will be monitoring this pretty intently. It is great that she is nourishing well enough to try this out, but there is a risk that her sucking muscles could cause new blisters inside her mouth.
-For positive biopsy results to come back. The doctors have had difficulty reading her results b/c EB is such a rare disease. There are only a few experts in the country who can accurately decipher such a test, and I have personally been in contact with two of them (one in Houston, TX, another in Nashville, TN, and one in Philadelphia, PA). We hope to have a better read on the test results within a week or so.
-There are two new black spots on Joella's right foot and ankle. The doctors think it is dead skin that will slough off, but they are not sure.
-For thanksgiving for her progress in her first week of life (She is a champion!) and, again, for the many, many praying and encouraging family and friends who have been incredibly supportive and kind to Katie and I. It is truly amazing and wonderful.
Joella's wound care specialist reported that her main blisters on her legs were healing pretty well. She is breathing without the aid of a breathing tube, and her digestive system is taking Mom's breastmilk fantastically although still through a feeding tube that is put up through her nostril and right down into her gut (amazing how that works, I know!).
The main attending physician said that he expects to remove her feeding tube in the next day or two, so that Joella can begin receiving breastmilk via a special soft nipple.
Both Katie and I got to hold her and rock her in a chair. It was so much fun! (these pics will be posted shortly).
Some prayer requests:
-For Joella to receive the nipple without causing any blisters in her mouth or esaphogus. The doctors will be monitoring this pretty intently. It is great that she is nourishing well enough to try this out, but there is a risk that her sucking muscles could cause new blisters inside her mouth.
-For positive biopsy results to come back. The doctors have had difficulty reading her results b/c EB is such a rare disease. There are only a few experts in the country who can accurately decipher such a test, and I have personally been in contact with two of them (one in Houston, TX, another in Nashville, TN, and one in Philadelphia, PA). We hope to have a better read on the test results within a week or so.
-There are two new black spots on Joella's right foot and ankle. The doctors think it is dead skin that will slough off, but they are not sure.
-For thanksgiving for her progress in her first week of life (She is a champion!) and, again, for the many, many praying and encouraging family and friends who have been incredibly supportive and kind to Katie and I. It is truly amazing and wonderful.
Wednesday blessings
This post is from Gale, Ella's grandmother:
Last night when I visited my grand daughter, her big blue eyes popped open wide. She's wiggling and stretching without apparent pain, and she listened intently as I sang to her. She definitely knows the voices of her Mom and Dad. I was able to take the first family portrait which should be posted shortly.
The first thing the nurse said last night was that her worst wounds are healing very well, and no new significant blisters. Her vitals remain strong, and there's no infection. Breathing is good, even though they're keeping a tiny flow of oxygen through nose tubes...mainly for hydration.
Katie and Joe have already developed a network with several other EB parents, and even a 30 year old woman who has dealt with the condition all her life, but is now married with 3 children. This network is able to give the information and answer the questions. Thank you Lord for Andrew,Sarah,Shawn, and the others.
We're still a ways from the comprehensive diagnosis we desire, but the current treatment will remain the same regardless of the reports. Our baby is responding well to this treatment, but your prayer are still needed. These have kept us all strong.
Blessings of the day:
*Ella is responsive and getting stronger on mama's milk
*Network of new friends and professionals are pulling this condition into focus for us
*Gale drove the roads of Alexandria yesterday without fear or incident
*Grammy Janet is coming back here today to join the Team
*Katie and Joe are getting good rest, and are dedicated to being the parents Ella needs them to be
*This rollercoaster ride continues, but we're learning when to hold on tight and grit our teeth, and when to put our hands in the air and allow the blessing to rush over us
Last night when I visited my grand daughter, her big blue eyes popped open wide. She's wiggling and stretching without apparent pain, and she listened intently as I sang to her. She definitely knows the voices of her Mom and Dad. I was able to take the first family portrait which should be posted shortly.
The first thing the nurse said last night was that her worst wounds are healing very well, and no new significant blisters. Her vitals remain strong, and there's no infection. Breathing is good, even though they're keeping a tiny flow of oxygen through nose tubes...mainly for hydration.
Katie and Joe have already developed a network with several other EB parents, and even a 30 year old woman who has dealt with the condition all her life, but is now married with 3 children. This network is able to give the information and answer the questions. Thank you Lord for Andrew,Sarah,Shawn, and the others.
We're still a ways from the comprehensive diagnosis we desire, but the current treatment will remain the same regardless of the reports. Our baby is responding well to this treatment, but your prayer are still needed. These have kept us all strong.
Blessings of the day:
*Ella is responsive and getting stronger on mama's milk
*Network of new friends and professionals are pulling this condition into focus for us
*Gale drove the roads of Alexandria yesterday without fear or incident
*Grammy Janet is coming back here today to join the Team
*Katie and Joe are getting good rest, and are dedicated to being the parents Ella needs them to be
*This rollercoaster ride continues, but we're learning when to hold on tight and grit our teeth, and when to put our hands in the air and allow the blessing to rush over us
Tuesday, June 26, 2007
A Special Time
Katie and I had a fun time visiting Joella tonight. She was particularly active and responsive to her Momma and Dad's voice. We came upon her incubator which has a pink blanket on top of it to shield against any light, and noticed that her eyes were wide open as if she knew we were just about to arrive. It was a special moment! She remained awake for our entire visit and was simply doing what babies do: wriggle, fuss, move about and constantly stare at us with blank looks. We loved it! We posted some new photos of Katie holding Joella and, also, of her birth day where the grandparents and me (in scrubs) were celebrating her arrival.
Earlier today, we spent a lot of time meeting with her attending physician, her wound care specialists, and the NICU (Neo-natal Intensive Care Unit) Social worker discussing her condition, etc. It was a lot of information to absorb, and we are still awaiting her biopsy results that will have a big impact on how Katie and I will need to care for Joella. Needless to say, we did not get to spend much time with her this afternoon, which made tonight's visit all the more special.
Earlier today, we spent a lot of time meeting with her attending physician, her wound care specialists, and the NICU (Neo-natal Intensive Care Unit) Social worker discussing her condition, etc. It was a lot of information to absorb, and we are still awaiting her biopsy results that will have a big impact on how Katie and I will need to care for Joella. Needless to say, we did not get to spend much time with her this afternoon, which made tonight's visit all the more special.
Monday, June 25, 2007
Momma Murray Holds Joella Today
Today, Katie got to hold little Joella for the first time. It was a beautiful site to see both Mom and baby happily rockin in the chair.
Celebrating Joella's Life
Dear Family and Friends,
Thank you for visiting Joella Gale Murray's blog site. Katie and I are so blessed to have this little princess in our life despite the tough news that she has a very rare skin disease, Epidermolysis Bullosa, which only affects 50 out of 1,000,000 births in the US. We certainly did not expect nor plan for Joella's condition, given that Katie's pregnancy was a textbook one with excellent check ups and doctor's visists. We believe the amniotic fluid in Katie's uterus was healing little Joella all throughout the pregnancy, and it is a miracle she survived being born. But we have accepted the fact that God has chosen us to be her parents to the best of our ability.
Currently, she is being cared for at the Children's National Hospital in Washington, DC by some of the best doctors in the world. The doctor's main form of treatment is to keep her skin hydrated and to keep her blisters on her extremities from contracting any infections. At this point, her vital signs are terrific. Her little heart and lungs are working beautifully; its just her skin, the largest organ, which is impacted by the disease.
We visit her daily and watch her move, open her eyes periodically, and pray for God's healing and comfort. She is in a general state of pain all over her little body which is being managed by morphine pain medications. She recognizes her Mommy and Daddy's voice and moves to show us she knows we are there.
At this time, Katie and I understand that each day we have with her is a gift from above. The good Lord could take her home at any time, but also could allow her to have a full life with treatment. We just don't know. There is no cure for the disease at this time, yet research continues to be conducted.
What we do know is that we have grown tremendously in the knowledge that God is in complete control of Joella's, Katie's, and my life. The Holy Spirit is sustaining us with the comfort of hundreds, if not thousands of praying folks like yourself, all over the country showering kind words and encouragement. We understand that this news is very hard to digest to all, and folks want to help us in any tangible way they can--all we need and ask for at this time is prayer for Joella's condition to improve and that she would be able to have a productive life free from pain. Katie and I will not be shy to ask for anything else that we need if and when we need anything.
The many emails and calls are so good to receive. They are wonderful. I close this post with a few Bible scripture verses that have been impactual to Katie and I since Joella's birth. Thank you for all of your love.
John 10:10 (We deemed this verse Joella's life verse) "...I have come that they may have life, and have it to the full."
Romans 8:28 "And we know that in ALL things, God works together for the good of those who love Him and are called according to His purpose."
Proverbs 19:21 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails."
James 5:16 "The prayer of a righteous man is powerful and effective."
James 1:2 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything....vs. 12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."
Isaiah 26:3 "You will keep in perfect peace him whose mind is steadfast because he trusts in you."
In Him,
Joe and Katie Murray
Thank you for visiting Joella Gale Murray's blog site. Katie and I are so blessed to have this little princess in our life despite the tough news that she has a very rare skin disease, Epidermolysis Bullosa, which only affects 50 out of 1,000,000 births in the US. We certainly did not expect nor plan for Joella's condition, given that Katie's pregnancy was a textbook one with excellent check ups and doctor's visists. We believe the amniotic fluid in Katie's uterus was healing little Joella all throughout the pregnancy, and it is a miracle she survived being born. But we have accepted the fact that God has chosen us to be her parents to the best of our ability.
Currently, she is being cared for at the Children's National Hospital in Washington, DC by some of the best doctors in the world. The doctor's main form of treatment is to keep her skin hydrated and to keep her blisters on her extremities from contracting any infections. At this point, her vital signs are terrific. Her little heart and lungs are working beautifully; its just her skin, the largest organ, which is impacted by the disease.
We visit her daily and watch her move, open her eyes periodically, and pray for God's healing and comfort. She is in a general state of pain all over her little body which is being managed by morphine pain medications. She recognizes her Mommy and Daddy's voice and moves to show us she knows we are there.
At this time, Katie and I understand that each day we have with her is a gift from above. The good Lord could take her home at any time, but also could allow her to have a full life with treatment. We just don't know. There is no cure for the disease at this time, yet research continues to be conducted.
What we do know is that we have grown tremendously in the knowledge that God is in complete control of Joella's, Katie's, and my life. The Holy Spirit is sustaining us with the comfort of hundreds, if not thousands of praying folks like yourself, all over the country showering kind words and encouragement. We understand that this news is very hard to digest to all, and folks want to help us in any tangible way they can--all we need and ask for at this time is prayer for Joella's condition to improve and that she would be able to have a productive life free from pain. Katie and I will not be shy to ask for anything else that we need if and when we need anything.
The many emails and calls are so good to receive. They are wonderful. I close this post with a few Bible scripture verses that have been impactual to Katie and I since Joella's birth. Thank you for all of your love.
John 10:10 (We deemed this verse Joella's life verse) "...I have come that they may have life, and have it to the full."
Romans 8:28 "And we know that in ALL things, God works together for the good of those who love Him and are called according to His purpose."
Proverbs 19:21 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails."
James 5:16 "The prayer of a righteous man is powerful and effective."
James 1:2 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything....vs. 12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."
Isaiah 26:3 "You will keep in perfect peace him whose mind is steadfast because he trusts in you."
In Him,
Joe and Katie Murray
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