Q: Can one touch Joella?
A: Yes. Joella loves to be touched, held, and caressed. Her skin does not blister by regular, normal touching. We are able to kiss her, rub her head to sleep, pick her up by the butt while supporting her head, inspect blister areas, etc. Only concentrated friction affects her skin causing blisters. Common blister areas for her are in the crook of her neck b/c she constantly wriggles, her face b/c she tries to put her hand/fingers in her mouth, and near her elbows due to her moving her arms all over the place.
Q: Will she be able to go outside of the home?
A: Yes. For the first few months, we will mostly keep her at home b/c she will be developing her immune system. In a little while, she will be able to go out wherever we want to take her. It would not harm her to take her outside once we she comes home, but for a while, we want to be conservative in limiting her exposure to infection, etc.
Q: Will she be able to play like a normal kid?
A: She should be. Depending on how her feet heal will determine her mobility, but all indications show she should be able to participate freely in most activities. If she develops a blister, we will just have to spot it and provide the necessary wound care (including moisturizing cleaning lotion and gauze wrap).
Q: Does she look more like her Mom or her Dad?
A: The jury is still out. It depends on the day of the week, and who is asking.
Q: What is her personality like?
A: Sweet as can be.
Q: How are you and Katie going to schedule your time to care for her?
A: Katie plans on returning to work full-time at which point Joe will become a stay-at-home Dad to care for Joella during the day and also work from home. Once Katie returns home from work, Joe will attend classes at Catholic Univ. Law at night. This is the initial plan subject to change. Also, we have hired the Grandma Brigade consisting of Grandma Gale and Grandma Janet for reinforcements.
Quick Update
Joella is bottle-feeding very well. She pulled her own feeding tube out of her nose (she listened to her parents suggestion to do so:-), and the nurses believe this is a good sign for her to rely on the bottle. Her antibiotics seem to be ridding her of the infection. They will run their course until early next week, at which point, we hope, she will not need any more antibiotics. Today, for the first time, her doctors mentioned the idea of her coming home. This was exciting to hear! We shall wait and see!
Friday, July 13, 2007
Thursday, July 12, 2007
It Ain't Easy Being Born
Grandma Gale Alexander has repeated this phrase many times in the three weeks (today) since Joella was born. We have learned that this is true.
Joella is one of 40 (on-average) babies in the Neonatal Intensive Care Unit (NICU) at Children's National Medical Center in Washington, DC. Most of the other babies in the NICU were born premature or have some respiratory issue which needs considerable attention. Before becoming a parent three weeks ago, I took for granted that babies just arrive as they should nine or so months after he or she is conceived in Mom's womb. We have learned that being born is truly a miracle from God and a process that is not an easy one for many, including Joella. We are thankful that the wonderful medical staff has provided her with tremendous care and attention during her time at the NICU.
A lot has happened since we last posted a few days ago. Here are the highlights:
-We decided against plastic surgery on Joella's feet. The overwhelming consensus from EB specialists and EB parents recommended to give more time for the skin on her feet to heal before opting for a surgical procedure.
-Another surgery on Joella, however, did occur. Yesterday, we consented to have a surgeon install what is called a broviac right above the bottom of her throat, such that an IV tube can feed antibiotics into her main artery. We were scared to do so, but she needed the antibiotics to stave off an infection, and other non-evasive options did not work. Thankfully, the procedure was successful, and Joella is recovering fantastically well. She had to be under anasthesia and the whole nine yards.
-Her temperature has remained stable the last few days and her wounds are continuing to heal.
-We said good-bye temporarily to one of the key members of our Team Joella, Grandma Gale Alexander. It was tough to say good-bye to this passionate, strong, and wonderful helper, but we are sure we will see her back here in Alexandria soon once Joella returns home. For now, she is back home in Wyoming taking care of her cowboy husband Ron.
-The information everyone wants to know is when is Joella going to come home. We desperately want to know this as well. Our gut says that once her antibiotics are done running their course next Monday, the infection is gone, and she is feeding close to 80% of her feedings via bottle, we should have her home by next week. This is not a given, but more a hope.
-We met another EB parent who lives in Atlanta, GA. He provided excellent insight into caring for and supporting an EB child. It was so encourgaging to listen to a positive parent express that he and his wife raise their child with a mindset that their daughter can grow up to be anything her heart desires. Katie and I adhere to this philosophy.
-Katie and I never cease to be amazed by the genuine kindness and care for us as we await the arrival of our daughter to our home. So many have brought us food, and offered to take care of our daily maintenance. It is hard to know what to say other than "Thank You," and that we hope we can be there for you in your time of need.
Our good friend Darla mentioned a song from Natalie Merchant called "Wonder" on a post today. I have always liked the song, but it now has significant meaning in our lives. Below are the lyrics. Check them out:
"Wonder" by Natalie Merchant.
Doctors have come from distant cities
just to see me
stand over my bed
disbelieving what they're seeing
They say I must be one of the wonders of God's own creation
and as far as they can see they can offer no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way
"People see me
I'm a challenge to your balance
I'm over your headshow
I confound you and astound you to know I must be one of the wonders of God's own creation
and as far as you can see you can offer me no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able
"laughed as she came to my mother
"know this child will not suffer
"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way"
Joella is one of 40 (on-average) babies in the Neonatal Intensive Care Unit (NICU) at Children's National Medical Center in Washington, DC. Most of the other babies in the NICU were born premature or have some respiratory issue which needs considerable attention. Before becoming a parent three weeks ago, I took for granted that babies just arrive as they should nine or so months after he or she is conceived in Mom's womb. We have learned that being born is truly a miracle from God and a process that is not an easy one for many, including Joella. We are thankful that the wonderful medical staff has provided her with tremendous care and attention during her time at the NICU.
A lot has happened since we last posted a few days ago. Here are the highlights:
-We decided against plastic surgery on Joella's feet. The overwhelming consensus from EB specialists and EB parents recommended to give more time for the skin on her feet to heal before opting for a surgical procedure.
-Another surgery on Joella, however, did occur. Yesterday, we consented to have a surgeon install what is called a broviac right above the bottom of her throat, such that an IV tube can feed antibiotics into her main artery. We were scared to do so, but she needed the antibiotics to stave off an infection, and other non-evasive options did not work. Thankfully, the procedure was successful, and Joella is recovering fantastically well. She had to be under anasthesia and the whole nine yards.
-Her temperature has remained stable the last few days and her wounds are continuing to heal.
-We said good-bye temporarily to one of the key members of our Team Joella, Grandma Gale Alexander. It was tough to say good-bye to this passionate, strong, and wonderful helper, but we are sure we will see her back here in Alexandria soon once Joella returns home. For now, she is back home in Wyoming taking care of her cowboy husband Ron.
-The information everyone wants to know is when is Joella going to come home. We desperately want to know this as well. Our gut says that once her antibiotics are done running their course next Monday, the infection is gone, and she is feeding close to 80% of her feedings via bottle, we should have her home by next week. This is not a given, but more a hope.
-We met another EB parent who lives in Atlanta, GA. He provided excellent insight into caring for and supporting an EB child. It was so encourgaging to listen to a positive parent express that he and his wife raise their child with a mindset that their daughter can grow up to be anything her heart desires. Katie and I adhere to this philosophy.
-Katie and I never cease to be amazed by the genuine kindness and care for us as we await the arrival of our daughter to our home. So many have brought us food, and offered to take care of our daily maintenance. It is hard to know what to say other than "Thank You," and that we hope we can be there for you in your time of need.
Our good friend Darla mentioned a song from Natalie Merchant called "Wonder" on a post today. I have always liked the song, but it now has significant meaning in our lives. Below are the lyrics. Check them out:
"Wonder" by Natalie Merchant.
Doctors have come from distant cities
just to see me
stand over my bed
disbelieving what they're seeing
They say I must be one of the wonders of God's own creation
and as far as they can see they can offer no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way
"People see me
I'm a challenge to your balance
I'm over your headshow
I confound you and astound you to know I must be one of the wonders of God's own creation
and as far as you can see you can offer me no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able
"laughed as she came to my mother
"know this child will not suffer
"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way"
Tuesday, July 10, 2007
Twp Steps Forward, One Step Back
In the last few days, Joella has made great strides in her feeding. She is taking her entire bottle, and the occupational therapists even had Katie breast feed her for the first time! This is good news in moving forward the time-table for her to come home with us.
Joella has already come farther than the doctors had anticipated in her healing and feeding regime except for both of her feet. They were a full-thickness wound and need much more time to heal. In consultation with a few EB experts around the country, we have decided to hold off on any plastic surgery to act as a catalyst to healing her feet. She will not start to walk until at least a year, so the experts suggested to give her feet this time to heal.
However, she had a bit of a fever yesterday (which had subsided by late last evening) coupled with a high white blood-cell count. The doctors started her on antibiotics for a concern that she has developed an infection. Infection is a major concern for EB children.
We ask you to specifically pray that the antibiotics help Joella to fend off any infection, and her little body will have the strength to fight it off.
Check out Psalms 91.
Joella has already come farther than the doctors had anticipated in her healing and feeding regime except for both of her feet. They were a full-thickness wound and need much more time to heal. In consultation with a few EB experts around the country, we have decided to hold off on any plastic surgery to act as a catalyst to healing her feet. She will not start to walk until at least a year, so the experts suggested to give her feet this time to heal.
However, she had a bit of a fever yesterday (which had subsided by late last evening) coupled with a high white blood-cell count. The doctors started her on antibiotics for a concern that she has developed an infection. Infection is a major concern for EB children.
We ask you to specifically pray that the antibiotics help Joella to fend off any infection, and her little body will have the strength to fight it off.
Check out Psalms 91.
Saturday, July 7, 2007
What's New?
For starters, we have posted a new video on the right-hand side called, "Joella and Gi-Gi."
Joella is bottle-feeding once every six hours with a special, soft-nipple bottle with feeding through her feeding tube in between the bottle feeds. She needs a lot of calories since her skin is healing faster than babies without EB.
Her wounds are continuing to heal every day, and Katie and I are taking an active role in her daily bandage dressings (which is a very good thing).
We received a 2nd opinion on whether to proceed with plastic surgery on her feet that contradicts the plastic surgeon's opinion to go forward with the procedure. The leading EB expert in the US believes it would not be necessary nor helpful for Joella--he has seen many EB babies whose feet and hands take longer to heal than other parts of her body. In addition, a few EB parents around the country have weighed in with similar concerns. Therefore, we are in prayer for what to do. If we had to decide today, we would opt not to go through with plastic surgery.
Specific Prayer Requests
-Plastic Surgery for Joella's feet or not?
-Joella's continued bottle-feeding success.
-Many EB patients are covered through state Medicaid Insurance in addition to their primary insurance coverage. Medicaid coverage varies from state-to-state, so we pray that Virginia accepts Joella's EB condition as a covered condition. Our Blue Cross Blue Shield primary insurance is good coverage (it covers 90% of her medical supplies). Hopefully, Virginia Medicaid will cover the other 10%. Our preliminary estimates range in the $200-$500/month of out-of-pocket medical expenses that Katie and I will be responsible for covering if Medicaid does not kick in.
-Continued healing for her blisters and wounds.
-For her to come home soon. It could be a week to six weeks time! We don't know.
Joella is bottle-feeding once every six hours with a special, soft-nipple bottle with feeding through her feeding tube in between the bottle feeds. She needs a lot of calories since her skin is healing faster than babies without EB.
Her wounds are continuing to heal every day, and Katie and I are taking an active role in her daily bandage dressings (which is a very good thing).
We received a 2nd opinion on whether to proceed with plastic surgery on her feet that contradicts the plastic surgeon's opinion to go forward with the procedure. The leading EB expert in the US believes it would not be necessary nor helpful for Joella--he has seen many EB babies whose feet and hands take longer to heal than other parts of her body. In addition, a few EB parents around the country have weighed in with similar concerns. Therefore, we are in prayer for what to do. If we had to decide today, we would opt not to go through with plastic surgery.
Specific Prayer Requests
-Plastic Surgery for Joella's feet or not?
-Joella's continued bottle-feeding success.
-Many EB patients are covered through state Medicaid Insurance in addition to their primary insurance coverage. Medicaid coverage varies from state-to-state, so we pray that Virginia accepts Joella's EB condition as a covered condition. Our Blue Cross Blue Shield primary insurance is good coverage (it covers 90% of her medical supplies). Hopefully, Virginia Medicaid will cover the other 10%. Our preliminary estimates range in the $200-$500/month of out-of-pocket medical expenses that Katie and I will be responsible for covering if Medicaid does not kick in.
-Continued healing for her blisters and wounds.
-For her to come home soon. It could be a week to six weeks time! We don't know.
Friday, July 6, 2007
A New Perspective
Hi Everyone, this is Joe’s sister Jenny, reporting in from Joella-Central. Today I had the privilege of meeting my niece for the first time – I even got to hold her! I asked Joe and Katie if I could cover the blog for today, July 7th, and they graciously said yes. So here is the latest news.
I want to share with everyone how glad I am that I was able to meet Joella in person. I was honestly very anxious about being in the hospital, and after reading about the condition on the internet, I was truly steeling myself for the worst.
But I can sincerely tell all of you out there in blog land that this little girl is a 15 day old infant like any other 15 day old infant, with the exception of the blisters forming and healing on her skin. I saw this little baby, breathing in and out, moving her arms and legs, making baby sounds, and it hit me – She is real. She is a person who has chosen to come into our lives. She is not scary – She is here to love and to be loved, and that is something we all can relate to. I used to think that acceptance meant “surrender”, in a negative way, having to give up on a situation that didn’t go the way I expected – but later in life I have learned that acceptance means saying “Thank You” for a gift, even if I do not understand why at the present moment I have received this gift. I am amazed and inspired by Joella’s mother and father, Katie and Joe. Standing in the hospital today, with Joe and Katie, I was humbled by their love and their total acceptance. The two of them are there for Joella, and no matter what she will encounter in her life, they are prepared to face it with her. Joella has come into our lives for a reason, and we will all be touched by how precious she is. So I say thank you to God, for the gift of Joella. For those of you who cannot see her in person, I hope what I have written here helps personalize this baby who has joined our family, and the larger family of the human race.
So on to the report: Joella had a busy morning – During her bandage change, she had a consultation with a plastic surgeon, Dr. Murthy. This surgeon is considered a “child prodigy” – he was even the subject of a New York Post article about a real-life “Doogie Houser” – Katie and Joe really liked this doctor – he talked to Joella and gently examined her blisters. Dr. Murphy was very pleased with the way her legs were healing. For Joella’s feet and ankles, he has recommended a procedure to graft bovine (cow) skin to her feet and ankles to prevent scar tissue from impeding joint movement and causing complications when Joella begins walking. This treatment would anchor Joella’s healing skin to her feet and be a catalyst for new skin to form. The procedure is tentatively scheduled for next Tuesday.
The bottle feeding did not go as well today. Joella received some additional pain medication to help her tolerate the dressing change and the examination by Dr. Murthy, so she was too tired to take the bottle. Not to worry, she is still receiving breast milk through a tube in her nose. Except for this feeding tube, she is tube-free – no ventilator or other monitors needed. The Occupational Therapist will return tomorrow morning before Joella’s bandage change to try again – she should be wide awake and ready to eat, as most Murray’s usually are after a good night’s rest.
More news tomorrow, stay tuned.
I want to share with everyone how glad I am that I was able to meet Joella in person. I was honestly very anxious about being in the hospital, and after reading about the condition on the internet, I was truly steeling myself for the worst.
But I can sincerely tell all of you out there in blog land that this little girl is a 15 day old infant like any other 15 day old infant, with the exception of the blisters forming and healing on her skin. I saw this little baby, breathing in and out, moving her arms and legs, making baby sounds, and it hit me – She is real. She is a person who has chosen to come into our lives. She is not scary – She is here to love and to be loved, and that is something we all can relate to. I used to think that acceptance meant “surrender”, in a negative way, having to give up on a situation that didn’t go the way I expected – but later in life I have learned that acceptance means saying “Thank You” for a gift, even if I do not understand why at the present moment I have received this gift. I am amazed and inspired by Joella’s mother and father, Katie and Joe. Standing in the hospital today, with Joe and Katie, I was humbled by their love and their total acceptance. The two of them are there for Joella, and no matter what she will encounter in her life, they are prepared to face it with her. Joella has come into our lives for a reason, and we will all be touched by how precious she is. So I say thank you to God, for the gift of Joella. For those of you who cannot see her in person, I hope what I have written here helps personalize this baby who has joined our family, and the larger family of the human race.
So on to the report: Joella had a busy morning – During her bandage change, she had a consultation with a plastic surgeon, Dr. Murthy. This surgeon is considered a “child prodigy” – he was even the subject of a New York Post article about a real-life “Doogie Houser” – Katie and Joe really liked this doctor – he talked to Joella and gently examined her blisters. Dr. Murphy was very pleased with the way her legs were healing. For Joella’s feet and ankles, he has recommended a procedure to graft bovine (cow) skin to her feet and ankles to prevent scar tissue from impeding joint movement and causing complications when Joella begins walking. This treatment would anchor Joella’s healing skin to her feet and be a catalyst for new skin to form. The procedure is tentatively scheduled for next Tuesday.
The bottle feeding did not go as well today. Joella received some additional pain medication to help her tolerate the dressing change and the examination by Dr. Murthy, so she was too tired to take the bottle. Not to worry, she is still receiving breast milk through a tube in her nose. Except for this feeding tube, she is tube-free – no ventilator or other monitors needed. The Occupational Therapist will return tomorrow morning before Joella’s bandage change to try again – she should be wide awake and ready to eat, as most Murray’s usually are after a good night’s rest.
More news tomorrow, stay tuned.
Tuesday, July 3, 2007
Two New Videos! See right-hand side.
Katie and I spent the entire day with Joella with a few goals in mind. We participated in morning "rounds" with her doctors where they briefed us in detail on her overall medical status. She received good reports on all accounts.
Secondly, we witnessed the complete wound-care regime from her head to toe. It took about two hours for the nurses to remove her bandages and re-dress her with new ones. This process is what Katie and I will be doing everyday for her.
Lastly, we were able to begin feeding her with a bottle, which was a lot of fun.
Prayer Requests and Praises:
-We are thankful that her UB tube (in her belly button for fluids and blood testing) was removed.
-We praise God that Joella has a new crib which replaced her incubator, and are especially thankful that she was fed 30 ml of breast milk from a baby bottle.
-We pray she does not develop any blisters in her mouth or esophogus due to her bottle feeding.
Secondly, we witnessed the complete wound-care regime from her head to toe. It took about two hours for the nurses to remove her bandages and re-dress her with new ones. This process is what Katie and I will be doing everyday for her.
Lastly, we were able to begin feeding her with a bottle, which was a lot of fun.
Prayer Requests and Praises:
-We are thankful that her UB tube (in her belly button for fluids and blood testing) was removed.
-We praise God that Joella has a new crib which replaced her incubator, and are especially thankful that she was fed 30 ml of breast milk from a baby bottle.
-We pray she does not develop any blisters in her mouth or esophogus due to her bottle feeding.
Singing to Joella!
While visiting Ella the other day, my mom and I were hovered over her incubator just staring at her and how beautiful she is. We soon started singing an old familiar song, “Jesus Loves Me.” It’s amazing how I have sung the words to this song my entire life, but now they have a whole new meaning. As we sang tears ran down my cheeks. Little ones…like Ella, belong to Him. When they are weak, he is their strength. Yes, Jesus loves Ella, Joe, me, and all of you.
Jesus loves me, this I know
For the bible tells me so.
Little ones to Him belong,
They are weak but He is strong!
Yes, Jesus loves me,
Yes, Jesus loves me,
Yes, Jesus loves me,
The bible tells me so.
Jesus loves me, this I know
For the bible tells me so.
Little ones to Him belong,
They are weak but He is strong!
Yes, Jesus loves me,
Yes, Jesus loves me,
Yes, Jesus loves me,
The bible tells me so.
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