9-30-06 It has been some time since we have updated the blog and we figured it was about time to do so! Things continue to go well with Helena, our little superhero. It is official - the doctor said that she has the record for the least amount of time spent in the hospital for this type of surgery. They also said that she is the poster child for how to heal from this surgery. Helena continues to astound as well as dazzle her medical team. She is just over a month old and she is already an overachiever! Ok, I have to brag a little bit! But bragging is my job right? We just had a check-up on Friday and she had another echocardiogram. The doctor said that the echo looked really good and they are happy with the way things are going. She will soon get her nose tube removed and the Dr. took her off two of her medications. No nose tube means no more tape on her face. We will update the site to show off her lovely cheeks. This weekend my sister Anne and her husband Grant are visiting. We took Helena on her first outing today(besides her doctors appointments). We walked to a cool restaurant called Medici's. Note the above picture of us walking to the restaurant in her new stroller and also a picture of us at the restaurant. We did keep a blanket over her car seat the whole time (except for the picture opp) so that she would not be exposed to airborne pathogens.

Next weekend Mary's brother Jon and his wife Sarah are coming from Vancouver Washington. Mary's sister, Karla will also come next weekend. Then the weekend after that, my parents John and Judy will be coming. Other than that Mary continues to take classes and I am still having a good time doing the chaplain thing at Christ Hospital. Enjoy the new pictures!

Hello, this is Mary writing for the first time. We brought Helena home from the hospital last Sunday, which was two weeks ahead of schedule. We are finally full-time parents dealing with regular newborn baby things - eating, sleeping, and changing diapers. We are both exhausted, but Helena is a pretty easy baby. She still has a tube in her nose that goes to her stomach. We give her medications through her tube and initially we fed her through the tube. She has learned how to bottle feed this week, which is also ahead of the doctor's predictions.


She is a very smart baby. Her eyes are very intense and we stare at each other quite often during the day and night--this is what we call "quiet alert." We are so happy to have her home. She is so much more relaxed than she was in the hospital. She is happy to be held and rocked instead of laying in a bed hooked up to beeping machines. I find that I am so busy attending to her every need that when Aaron comes home in the evening I always wonder how I have gotten nothing done all day in terms of house cleaning or homework. And Aaron is always so anxious to hold her and feed her when he gets home.

Mom and Dad came today for a visit (they will be here through Wednesday), and David and Karla came on Thursday night and will leave tomorrow (Sunday). They all have been talking about how she is truly above average!

While she is doing all the normal baby stuff, it is still pretty tense to know that we have to handle her so carefully--for example, we can't let her cry for more than a few minutes because that overworks her heart. We have to be very careful with the risk of infection, so we cannot let too many people touch her or come into contact with too many people--we pretty much stay home! She will be in this fragile condition until after her second surgery, which will take place sometime between December and February (depending on her weight and growth). To move her along toward that goal, we add formula to the breastmilk she drinks to fortify it. Initially she was getting one bottle every three hours on the dot; now we can actually feed her "on demand"--which is becoming more and more regular! She weighs 7 lb 6 oz--which means she has gained an ounce a day since she came home from the hospital.

Helena after her first ride in the car! Her first ride in a motor vehicle was in an ambulance with the lights and sirens blaring! I believe that the car ride was much more comfortable as is evidenced by her sleepy behavior!

HELENA IS HOME! HELENA IS HOME! Ok, I am going to have to brag. Not only do we have the most beautiful baby in the world, she is one tough cookie! Normally babies who have this surgery have to stay 3-4 weeks after the operation. Helena made it home in 12 days! That is not even two weeks! She is a super baby! One of Helena's surgeons said that she is a "miracle baby" which I completely agree with. Helena, Mary and I were helped by all of your prayers! I firmly believe that this is the reason why she healed so rapidly! Helena has the support of such a wonderful community! You! It is amazing and humbling to think about all the prayers and support that we have received. I want all of you to know how much this means to us and our little super hero baby. At the moment, Helena is sleeping, well.......like a baby! I think it helps that she does not have a million machines beeping in her ear. We have never seen her so relaxed! We will have a home health nurse coming a few times each week to check up on Helena. She also went home on 4 different medications to keep everything going. Her next surgery (surgery two) will be any where between 3-6 months. But for the moment we are celebrating her being home for the first time! God bless....Aaron

More good news! Helena has been moved from the PICU to a normal floor. She is no longer on an IV or receiving oxygen. She is being fed regularly (Mary's milk) through a nasal/gastric tube to her stomach. Mary actually put the NG tube by herself yesterday, "on the first try," she adds.

Today, they were going to try feeding her with a bottle; she has been practicing with a pacifier for the last few days, and does a pretty good job. Aaron said that she has actually been using her fist to hold her pacifier in place--"an absolutely brilliant child." It looks as if she will be able to go home ahead of schedule, possibly as early as Saturday, but probably next week.

Yesterday, Mary and Aaron were given the "care and feeding" instructions for when Helena returns home with them. They got a lot of information and were a little overwhelmed by the responsibility. Over the next few months it looks as if they will need to stay close to home, not travelling very far from Chicago, and will need to protect Helena from a lot of activity or large groups of people. After the second surgery in February or March, she will be able to handle quite a bit more. At any rate, her recovery so far has been remarkable--even the resident cardiologist couldn't believe how well she was doing.

Right now, Mary and Aaron have set up camp with Helena in her room, and will stay with her until she is released.

More soon...

Karla (Mary's sister)

Hello World, Here I come! Helena is doing really well, so well we don't trust her at all! Today, Helena's outside oxygen was decreased to 30% (we breathe 21% oxygen, so it is not much more than what we get), they increased her food intake and we were able to hold her for the first time since before her surgery! Mary held her for about three hours and I held her for another 3 after work. They will continue to increase Helena's food intake and keep unplugging all of her lines. We are so excited at how well she is doing!

Helena has started eating! Today the nurses started Helena on a low dose of breast milk and they will keep increasing it throughout the next few days. Finally, after 12 days of not eating, Helena will be able to get some food. I worked last night in the ER and was able to see Helena a couple of times throughout the night. Much to my suprise she was incredibly alert each time I saw her! Apparently, she is a night owl. She was also alert for most of the day when we were with her. Tommorow I will go in early to see her and Mary will come later in order to spend most of the day with her. Hopefully, we can take her home soon, that will be such a wonderful day! This is a picture of Helena from yesterday.

9-3-06

Helena is off the ventilator! Our doctor removed Helena's ventilator at about 10:30 this morning and she is doing really well. She is breathing on her own with the help of a nasal canula and 30% oxygen. The doctor told us that the next 48 hours are especially crucial after an infant is removed from a vent. It is not unheard of to have to put infants back on the vent, but so far so good. Tomorrow they will try to feed Helena a really easy to digest type of formula. If she tolerates that, then they will try some breast milk. The doctors are also weaning her off on a lot of her medications. Every day she has less and less connections to machines. The nurse also reported that she could go home within a week if she continues on the schedule that she has layed out for us. But who knows? We are thankful for her progress thus far. She is a tough little girl wrapped up in a seven pound package. Much tougher than I am, that is for sure! Tonight I am working at the hospital from 12-8 am and I will be able to see Helena throughout the night. Tonight is a holiday, the ER should be an interesting place? God bless......Aaron

9-2-06

Helena had another great today. She had her eyes open for over 3 hours and we sat and stared at each other! She has really, really beautiful eyes and I think she might have my eyes? Everything else comes from Mary, thank goodness! Today, Helena got her two chest tubes removed and they continue to lower her medications. Tomorrow Helena will be taken off the ventilator! We are so happy! They are planning on taking her vent out by around 8:00 am so that means we will get there around seven tomorrow morning. We can't wait to be able to see Helena's face again! Right now her face is hidden by all the tape that holds her vent in place. Each day she gets more and more things unplugged. Soon we will have a Helena completely unplugged! The Doctor said today that he is going really slow in removing the tubes, but she just keeps moving him along! Go Helena, GO! Thank you again, for all your cards, prayers and support. I know that this is what is moving Helena along so quickly. God bless!

9-1-06

Helena opened her eyes today! Helena opened her eyes today! Helena opened her eyes when I visited her before work at about 6:30. It was so cool! We just sat and stared at each other for a half hour. Helena continues to do well and the doctors say that she is breaking all the rules for healing after a Norwood surgery. We are so happy that little Helena is doing so well! On Monday Helena will be extubated, which means they will take her off the ventilator. This can be kind of a dangerous thing because it can take awhile to get readjusted to the world's oxygen. They will also hopefully take out her two chest tubes! Each day she will hopefully have less and less tubes sticking out of her! Tomorrow our plan is to go to the hospital and just stare at Helena's eyes, they are so beautiful! In other news, I started my chaplain work today at Christ hospital! It is a great place to work and I was even able to spend an hour with Helena during lunch. Mary and her sister Lana spent the day visiting with Helena, this was Lana's first time seeing her niece. This is her first niece ever!

Lana is staying with us right now and my sister and brother in law will be arriving tommorow (Anne and Grant). Dorothy flew off to Phoenix to see her mother and will be back tommorow. My own parents, John and Judy left today after having lunch with me at the hospital. We have wonderful family, friends and support from you all! God bless and goodnight!