Saturday, July 28, 2007

The first few days at home

Sorry for taking so long to post the details of Ella’s discharge from the hospital. I know a lot of you have been anxiously awaiting the details. As you can imagine, the first few days home with a new baby (even one that is 5 weeks old) is quite an adjustment.

Most of you probably know that I went back to work for the last couple of weeks. My employer allowed me to go back to work for a few weeks until we knew when Ella would get to come home. This let me save more of my FMLA time to be with her. So I went back to work for 2 weeks, which meant that I missed out on the dressing changes and rounds that the Dr.’s made each morning. Joe did a great job of keeping me informed of all that was discussed. We knew she was getting close to being discharged, but we didn’t know exactly when it would happen, so when Joe emailed me on Monday morning and told me to pack my bags, I almost couldn’t believe it was true.

On Tuesday night Joe and I spent the night at the hospital. Before a baby is discharged they have the parents come and stay the night in a family bedroom that they have so that they can simulate what it will be like once the baby is home. There is minimal nursing care (other than a few stop in’s to check the baby’s vitals) and the parents are pretty much on their own. Ella did great that night. She woke up pretty much every 2 hours like clock work. Joe and I actually did pretty good through the night. It was about what we expected.

Wednesday seemed like the longest day we’ve had so far! There were so many things we needed to do before Ella could come home. We listened in on rounds and did her dressing changes as usual. The biggest hang up for our discharge was getting the broviac removed. There are a lot of kids needing surgery throughout the day, so the surgeons were busy taking care of them. The earliest time someone could come take the broviac out was about 3:00 pm. Joe and I also had to go get the car seat tested to make sure it was installed correctly. Wow, I never knew that so much went into putting a car seat in! The woman who helped us took her job very seriously and covered all the bases with us. Given that she has the lives of hundreds, if not thousands, of kids in her hands, I’m glad that she was so thorough. One thing that I’m sure of is that car seat base isn’t coming out of the car until Ella has outgrown the seat and we’re going back to Children’s to have the next size installed!

Joe and I also had to go pick up her prescription medications because the nurse has to make sure that we know how to administer it properly. We passed with flying colors, thank goodness. By the time we got back to the hospital the surgeon was in the process of removing the broviac. Now we just had to wait an hour to make sure there were no complications, and we could be on our way home. They let us go back into the family bedroom to rest for that hour. Joe slept and I just sat there watching the clock, waiting for 5:00 pm to arrive. The knock came at the door and we were told that after 34 days of waiting we could finally take our little girl home.

For those of you who have never had a baby in NICU, leaving the hospital after delivery without a baby is a very unnatural thing. You go to the hospital with such high expectations of what the ride home will be like, what will you do once you get home, what outfit will the baby wear, who will be the first guest, will Dad drive as crazy as he normally does or will he slow things down for your precious cargo? But you leave empty-handed, so everything is different…things are incomplete. So it was wonderful to finally get to dress her in her “going home” outfit (that her nurse Clarissa bought for her), strap her into the car seat, say goodbye to all the Dr.s and nurses that have become like family, and take that graduation walk. Things were complete…as they should be.

The drive home was wonderful, to say the least. Joe drove very cautiously and I, of course, sat in the back seat so that I could be there in case anything happened. We got home and did what I assume all new parents do…we sat and stared at our sleeping baby. She was beautiful and perfect in every way…perfect because she is exactly the way God wanted her to be and He doesn’t make mistakes.

Ella’s first visitor was Becky, our good friend and neighbor. Her second visitor was Darla, another good friend. I’m confident that she is the cutest baby either of them has ever seen, even though they didn’t use that phrase exactly.

Now, for the info you’ve all been waiting for, the first night! She cried…A LOT!!! She basically cried and ate until about 2 am. I just kept telling myself, this can’t last all night, she has to fall asleep at some point. I also kept reminding myself that unlike other sleepless nights, the next morning we didn’t have to wake up and be at the hospital by 9am. Finally at about 2 am she fell asleep. She woke up about every 3 to 4 hours after that. We all slept in until 10am.

We met with Ella’s pediatric dermatologist at noon. He has dealt with EB babies in the past, which is why we chose him. He looked at her foot, we talked about family history, my pregnancy, and her entry into the world. It was a good visit.

Thursday night was much better than Wednesday. Ella fell asleep around 10 and woke up about every 4 hours to eat. We still slept in. Shortly after we woke up this morning we gave Ella her first bath. She didn’t like it very much. We can only assume that the water hurt her poor feet a bit, but it was something that had to be done. Hopefully it will get easier as time goes on. We went to her first pediatrician appointment this afternoon and Ella is now 7 lbs 8 oz (there was a mistake a few weeks ago, she has never been over 8 pounds, it was a misunderstanding of medical lingo…we had that a lot) and she is 20 inches long. She was sound asleep when we got to the Dr.s office and of course when we had to wake her up she screamed the entire time. Man, that girl has some serious lungs! After her Dr.s visit we went to Joe’s office to show her off. It was his boss’ birthday and we thought that would be a great present. I made the mistake of telling Joe that he could pick out the outfit Ella would wear since it was his office. Of course he picked out her Mets outfit, which resulted in several strangers calling her a boy. I’m not offended, its hard to tell with these babies. When we got home I couldn’t take it anymore so I went upstairs and took a nap. Little did I know that Ella was sleeping right next to me and that my sneaky husband had taken our picture (its posted with the other pictures).

So, there you have it. The first 2 days have been good. The plan for tomorrow is to take Ella for her first walk. Now she is starting to stir and poor Joe is zonked out on the couch, so I had better go prepare the bottle. Thank you all so much for the countless prayers and words of encouragement. Ella is finally home. We are so blessed!


Friday, July 27, 2007

New Pics

Under "Pictures of Ella," the last eleven pics of the group are of her first day at home with Katie and I (our neighbor and great friend Becky Brittain snuck a photo of herself with Ella in as well).

Wednesday, July 25, 2007

Welcome Home!

It's official. Joella is home!!!!!

We brought her home this afternoon. Pictures are forthcoming.

Saturday, July 21, 2007

The best $25 we have ever Spent

We bought Ella a new music toy for her crib, and she loves it! This morning, she would fixate on it and spend a lot of time just checking the sounds and colors out. Check out the two new videos, "Ella and her new Toy," and "One Month Old." Also, there are seven new photo shots of her this morning in the "Pictures of Ella" link.

Friday, July 20, 2007

Fat Baby!

We have several things to praise God for that weren’t mentioned in the post last night. It was late and we were tired, what else can I say.

Ella is a porker (I don’t want to speculate which side of the family she gets that from). She is eating like a pig and is gaining a ton of weight. She weighs over 8 lbs now! Too bad she won’t be able to wear those newborn clothes we have at home. I always feel bad when she’s hungry and the bottle isn’t coming fast enough. She gives me this look that says, “Why aren’t you feeding me? I’m starving and you’re not feeding me yet.” It’s heartbreaking. The problem we have is that Ella isn’t very patient when it comes to her bottle. She wants it when she wants it and is not willing to wait. I don’t have any other kids to compare this to so I don’t know if all babies are that way.

The hospital did Ella’s car seat test the other day. They have to put the baby in their car seat and sit there for a couple of hours to make sure their vitals are stable. Ella passed with flying colors! And we found these little strap covers that will keep the straps from digging into her and causing blisters. Passing this test puts her a step closer to coming home!

She has her hearing test today, which I think will be ok since she responds so well to our singing. The only issue we have now is that she keeps scratching her face. I know that all babies do that, but with her fragile skin it just manifests itself so much worse! We are trying to keep mittens on her, but she’s a mover and a shaker so sometimes they come off. And she uses 2 or 3 pair a day because she is so lubed up from the ointment that she gets them all greasy.

We are so blessed with this sweet baby. Thank you all for your continued thoughts and prayers.


Thursday, July 19, 2007

Interesting News

Two new videos are on the right-hand side (Warning-Naked baby:-)

Joella is on day 9 of 14 of antibiotics to fight off an infection. We are more concerned about this infection than the doctors seem to be, so we ask for prayer for it be gone as soon as possible.

We received good news in the form of her biopsy results. They came back from an EB lab in Buffalo, NY showing she has a rare form of EB for which her blistering and fragile skin could lessen significantly after 1 to 2 years of age. We are sending an additional skin sample to a different lab at Texas Children's Hospital which, hopefully, will confirm the initial results. Although the initial results appear promising, we are cautiously optimistic-only time will tell about the severity of her condition regardless of what words on paper say. However, any good news is still good news we will accept. Thank you for your prayers.

Tuesday, July 17, 2007

Birthday Wishes

Well, I did not get my B-day wish of having Joella come home today, but, nonetheless, it was a good day.

Katie handled her dressing change today solo, as Dad needed a day to get caught up on some much needed rest. Joella ate well today from the bottle. We also learned that she will be on antibiotics for another week. If all goes as well as planned, she could be home in 10 days. We pray this happens.

That's all for today!

Friday, July 13, 2007

Frequently Asked Questions

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!

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"

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.

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.

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.

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.

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.