Merry Christmas everyone!

I just celebrated my very first Christmas! Grandma and Grandpa Suomala, lots of aunties and uncles, and two cool cousins came to celebrate with me. And I got presents!

Here I am--pretty in pink. My grand-aunties sent me this ensemble--it works for me, don't you think? The pink thing makes my dad a little nervous, though, but he shouldn't worry, I'll be using my Carhartt hat and bibs soon enough. Besides, I don't think my cardiologist would like it if I started welding just yet.



Here I am with my mom and dad. When everyone was here, I got to stay with Grandma and Grandpa so my mom and dad could do a night on the town. I did just fine, but I think they missed me, especially at 1:30, 3:30, and 5:30 am!!









Here I am with my cousin Jacob. He's 8 years old and really nice. He likes Star Wars stuff a lot. He was very good at holding me. I was kinda sad that he had to go home.











I got to meet my cousin Stella too. She's three and likes to be a princess sometimes.











During my naptime, everyone went out to see Chicago. Here's Grandpa, Grandma, and Stelly at the Shedd Aquarium. Mom said that I could go to the Shedd when I'm a little bit bigger to see the baby beluga.

Helena really is a superhero baby. Since she has come home, she has learned to turn over onto her side and she has started laughing again. She is more grumpy than usual, but she has a 4 inch incision on her side and so that is understandable. And we still have to be a little gentle with her. We can't lift her up under her arms for 7 more weeks and we have to limit her exposure to large groups of people for another month. And we still can't give her a bath in the tub for another couple days because her incision can't get wet. Other than that, life with baby is getting back to normal.

HELENA IS HOME!!! We simply can't believe it, Helena is home. We went to the hospital this morning at around 8:30 and we were gearing up for at least one more night, maybe more. But, after the doctors rounded at around 9:30, they came to us and said "There is nothing more that we can do, do you want to go home today?" We said, "Are you kidding? Of course!" We made it home at around 4:00 and Helena seems much more comfortable. She is still in a bit of pain but we are able to control it with good old tylenol. We will keep working on increasing her food intake and making sure that she gets enough rest. She will need to keep her activity and contact with other people to a minimum for at least 8 weeks. The folks at Hope Children's hospital and the surgical team of Dr. Ilbawi are an amazing group. Just think of that, they operated on her heart and two nights later she is home. I am still trying to wrap my ahead around that one! We think that our baby is part superhero!

Here some pictures from today. Helena was much more calm today because we could give her food. As you can see in the picture, Helena is hooked up to a lot of cords and monitors. Her incision was in the right side, as you can see. And she has a chest tube in her side as well. Hopefully that will come out tomorrow. She held my orAaron's finger all day even in her drugged state.

Hello Everyone. Helena had really good first night thanks to all the medications she was on! Today she has started eating again and is completely off supplemental oxygen. She is already ahead of the game and the surgical team is talking about discharge this weekend! I gotta tell you, this kid is above average. We will keep the updates coming......Aaron

HELENA HAD A SUCCESSFUL SURGERY! Helena went into the operating room at about 1:00 and was out by 4:00pm. Helena astounded the doctors at how well she is doing and further astounded them by going off her ventilator almost immediately after surgery. Yes it is true our child is above average as Garrison Keillor might say! In Helena's case, we think she is WAY above average, that is our personal bias. Helena will spend a few days in intensive care and will spend a night or two on the regular floor. The doctors say that she will more than likely spend at least five days in the hospital. However, this is an average number and it could be longer or shorter. Thanks again for all your prayers, we appreciate the support!

Hello everyone! Things here in Chicago have been going pretty well. I am enjoying my work at the hospital, Mary is in the process of finishing her first semester and Helena is still doing really well. Our latest news is that Helena will be having her second surgery on Thursday December 7th. In this surgery the surgeon or as I call him "The Rock Star" will add a second shunt on the side of her heart that pumps blood out to the lungs. Basically the surgery is to increase her oxygen levels. In this surgery they do not have to stop her heart and they do not have to crack her chest. The surgeon will actually go in through Helena' side. How does he do that? Well I don't know and I really don't want to know! Sometimes too much information is dangerous. I still can't imagine how this guy is able to operate on a heart that is the size of a strawberry. The only way I can explain it is that such a talent is a true gift from God. We are thankful for Dr. Ilbawi and his wonderful team that will perform the surgery! These people are incredible, believe me!

Helena, Mary and I will have to spend about 5-10 days in the hospital. There are no perks to staying in the hospital except for the free donuts that are delivered to the waiting room each morning at 8:30 a.m. They are darn good donuts! My Dad will also come down from Minnesota to help out. Enclosed are some pictures from Thanksgiving. My parents John and Judy came down in addition to my sister Anne and her husband Grant. We celebrated Thanksgiving with our neighbors one level below, the Manisto-Saari's. In case you are wondering, they are Finnish too! Very Finnish to be exact! Thank you again for all your continued prayers and support! God Bless and check back often as we will daily update the blog starting on the 7th to keep everyone posted about the outcome of Helena's surgery.

On Thursday, November 9th, Helena had a cardiac catheterization procedure done at the hospital. We got to the Pediatric Intensive Care Unit before 6am and could not feed her anything before she was sedated and intubated. She was taken to the catheter lab and the procedure took 2 hours. The team went into her groin with a tube that traveled up to her heart and took pictures with a fiber optic camera. They also checked the oxygen level in all four chambers of her heart and found that she was doing well. Based on this procedure, the doctor said that she will have to have her next surgery in 1-2 months. So it could be either before Christmas, or after.

After she was weened off sedation, she woke up and was extubated. But we had a scare that evening because she had a really bloody stool in her diaper. None of the doctors on her team had seen anything like it after a catheter procedure and they checked for internal bleeding. There was no internal bleeding and her hemoglobin and platelet levels were fine. I suggested it was an allergy, but the doctors dismissed it. However, the next morning a gastrointestinal specialist was called and he said that her stools looked like a typical milk allergy (my suggestion the night before). Her cardiologist realized that her stool was extra bloody because the sedatation drugs irritated her already irritated stomach lining.

The doctor told me to stop eating or drinking all dairy products. Helena was put on a soy-based formula for 48 hours while I cleanse my system of dairy products. We bought some soy milk for me and tomorrow morning I will start giving her breast milk again. Hopefully we have discovered the right allergin and she will be less fussy in the evenings and start to gain weight more rapidly.

That was our adventure. She hated every minute in the hospital and she is very happy to be home.

Happy Halloween! Helena wanted to show you her pumpkin costume! We didn't go trick or treating, but I took her to the seminary today to show her off.

We found out that she will have her catheter procedure on Thursday, November 9th. This procedure will give the doctors a good picture of her heart and help them determine when her next surgery will be. The nurse told me that Helena will not feel any of it and that she will not remember anything because of the anesthesia
that they use. I think it is probably harder on Aaron and I to see her go through it.

This is a day in the life of our family: Aaron gets all gussied up for work as a chaplain, Mary stays at home with baby and studies for her 2 classes, and Helena just gets cuter.

We went to see her cardiologist today and he said that she is progressing very well. They did an Echocardiogram and her heart still looks good. She will have to spend a night at the hospital in 2 weeks for a catheter procedure. They have to sedate and intubate her to do this procedure. The results will tell us when her next surgery will be. Currently it looks like it will be right after Christmas.

Helena is growing slowly, but her doctor that that is normal for cardiac babies. Her heart works pretty hard and so she burns calories like mad instead of storing them and getting chubby. She is in the 5th percentile in weight, but she is in the 50th percentile in height. She is tall and thin.

In other news, Helena will be a pumpkin for Halloween. And this Halloween will be the 8th anniversary of my and Aaron's first date. Wow, things sure have changed in the last 8 years.

This is an update just to say that Helena is doing well and that she is cuter than ever (and because her grandparents need to see some more pictures of her). She has been eating more lately and gaining weight. What a champ! We will hear more about when her next surgery will be in the next few weeks.

We took the tube out of Helena's nose last week and she is so happy to have the tape removed from her cheeks. Isn't she cute? She has been cooing and grunting and grabbing things.

I took her to a regular pediatrician on Monday for the first time. Up until yesterday she had only seen specialists. This was her first "well baby" check. She is well, but she is on the small side of all the scales. We will have to keep trying to fatten her up. She is thriving and happy though.

She loves to sit in the activity chair that she got from some dear friends, Abby and Kevin. And in the above picture, she is wearing a viking medallion given to her by her cousin Jacob. He is very interested in those ancient sea farers. Helena's viking nickname is Helena-Lives-Through-Squalls. She has certainly lived through many squalls in her short life.

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!

8-31-06
Helena had another good day today! The big news is that Helena chest was closed today-one day early!!! After her surgery they kept her chest open, so that there was room for things to expand. As I said in my last post, babies who have this surgery swell up quite a bit. Luckily, Helena has not been that swollen. So at about 1:30 this afternoon the surgeons closed up her chest in the hospital room. The doctors say that she is healing up quite well and she is re-writing the book on how to heal from the Norwood procedure. Each and every day we are extremely thankful for each step that Helena makes toward recovery. Tomorrow I begin my job at Christ hospital as a chaplain and hopefully Helena will have a few more tubes removed. We still have a long road to travel, but we are thankful for each moment with our daughter. Thank you for all of your love, support and prayers. God bless, good night and more tomorrow.

Thank you for all your kind words, notes and prayers! You are such an amazing group of people! We are humbled by your concern for our little Helena. May God continue to bless all of you, just as God continues to bless us! I called the hospital at 8:42 this evening (8-30-06) and Helena is doing amazingly well. The doctor said today that he did not have to give us the, “Your child is puffy lecture,” because Helena is not that puffy at all. Now she just looks like a really chubby baby. Normally after a child receives open-heart surgery they swell to two or three times their size because of all the fluid build-up. The Dr. does not know why she is not puffy, but as he said, “I don’t care why. She is not and we will run with it!” Oh by the way, her pediatric cardiologist is Lutheran! How cool is that! They also told us that Helena must have read the book on how to recover from this procedure because she is healing so well. At the same time, Helena is still very critical and we have to take it hour by hour. But we all continue to breathe a little easier. Mary is doing well and continues to heal after her C-section. I am learning that these two Suomala Folkerds women are feisty and you can’t keep them down long! I am so lucky to have them! They inspire me with their incredible strength. If things continue to go well with Helena and Mary, I am planning on starting my job as a chaplain at Christ Hospital on friday. I will only be a 5-minute walk from Helena at any given part of the day. It is crazy how that one worked out! Good night and God bless!

This is Aaron here…..I just called the hospital at 8:00 this evening and Helena is doing well. They are increasing her fluid intake and are giving her some blood plasma. We were assured that these are all normal things for a baby just a few hours out of open-heart surgery. Tomorrow we will go to the hospital at around 9:00 or so. Helena is still very critical and has a long road ahead, but we are all breathing a little easier. I want to thank all of you for your kind words, prayers and support. These are the things that continue to give us energy each and every day. Thank you for everything that you continue to do for us. God bless and we will say more soon!

POST #7

Tuesday, August 29

Helena came out of surgery at 12:45 pm today; she is in recovery, and in critical condition, but doing very well.

This morning, Aaron and Mary met the surgeons who would be operating on Helena, and Aaron thanked Dr. Ilbawi for his efforts on Helena's behalf. "It's the least I can do," he said. By 8:30 am Helena was under anesthesia, and first incision was made. The family received hourly reports throughout the morning, all of which were positive. The surgery took about five hours, less than Mary and Aaron were told to expect. The surgeon's were very pleased with how it had gone.

The next few hours will be especially critical, and Helena will likely remain in critical condition for the next week or so.

More later today.

POST #6

Monday, August 28

Helena's surgery will take place tomorrow, Tuesday, August 29, starting at around 7:15 a.m.

Today was pretty sobering for Mary, Aaron, and the grandparents, as they met with the surgical team to learn more about what Helena's surgery and recovery will involve. Mary says that they explained every part of the process, as well as the possible complications and risks. Everything is "seeming more real right now," she told me as they were on the way home from the hospital this afternoon. Dorothy noted that they are all "feeling pretty overwhelmed" because the surgery is "far more complex and serious that any of us had imagined. We're shellshocked."

The team will come for Helena at around 7:15 am, and her surgery will begin shortly after that. It will take about 8 hours. The medical team will need to stop Helena's heart functions, which means that she will be placed on a heart-lung machine. In addition, her body temperature will be reduced to about half--50F. The surgery is considered high risk, and recipients generally have an 80-90% chance of survival. In the fairly recent past, this type of surgery was not even possible, since the Norwood procedure was developed in the 80s. Although this sounds scary, Dorothy emphasized that Helena has "the best possible surgeon."

In general, Helena's prospects are very good, since she was full-term and is in good physical condition now. She had excellent pre-natal care, and Mary was very healthy during the pregnancy. Christ Hospital does more of these types of surgery than any other in the country, but they still do only about 25 per year. Ultimately, though, Mary and Aaron know that Helena is in God's hands and they are grateful for your prayers.

During the surgery, someone will provide hourly reports to the family, letting them know how the surgery is progressing.

Recovery is also going to be a process that they will need to "take one step at a time." According to Mary, "there is really no telling how long any of this could take." After the surgery, Helena's chest will remain open for about a week for monitoring, as well as to accommodate the swelling. It is possible that she will be in the hospital for a month after the surgery. When Helena is between three and six months old, she will require another surgery, followed by a third surgery when she is between 12 and 18 months. The Norwood procedure is a series of surgeries, not just one (see the link in the column to the right).

When they arrived at the hospital today, Mary said "it was hard to see her with a vent, but she didn't look uncomfortable." The nurse unwrapped her, and though they couldn't hold her, they could rub her tummy and play with her toes. Helena was sedated because of the vent, but she still opened her eyes, and tried to move around, "reaching out and stretching her arms." "Her color was so good--pink," Dorothy said.

At around noon, they held a service of blessing for Helena, led by Pastor Dennis from St. John's in Somonauk, IL (Mary's internship pastor). Aaron read Psalm 139, where the psalmist begins

"O Lord, you have searched me and known me. You know when I sit down and when I rise up; you discern my thoughts from far away," and continues: "For it was you who formed my inward parts; you knit me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes beheld my unformed substance. In your book were written all the days that were formed for me, when none of them as yet existed."

John read Psalm 121, where the psalmist looks to God for assistance, and is certain of God's presence:

"I lift up my eyes to the hills—from where will my help come? My help comes from the Lord, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. He who keeps Israel will neither slumber nor sleep. The Lord is your keeper; the Lord is your shade at your right hand. The sun shall not strike you by day, nor the moon by night. The Lord will keep you from all evil; he will keep your life. The Lord will keep your going out and your coming in from this time on and for evermore."

John also talked about Isaiah 43, where God assures the Israelites:

"Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you... For I am the Lord your God, the Holy One of Israel, your Saviour."

Tonight, Mary and Aaron are trying to get some rest, because tomorrow will be a terribly long day for them. Mary's blood pressure remains stable today, and she is experiencing less pain. Her milk has come in and pumping is a lot less stressful. Overall, Mary and Aaron seem to be holding up well, and are so thankful for your support.

Karla (Mary's sister)

Welcome to Helena's Blog! If this is your first visit, SCROLL DOWN to the bottom of the page to start at the beginning of Helena's story. If you've been here before, I added three new posts on Sunday evening--3, 4, and 5--so scroll down a few slots to see what's been going on.

Please feel free to send your greetings to Mary, Aaron, and Helena by using the COMMENT function. Just click on "Comment" at the end of any of the posts, and you will be able to write a note.

Karla (Mary's Sister)

POST #5

Sunday morning...

John brought Mary and Aaron to the hospital early today--they arrived at around 8 am. Mary and Aaron wanted to spend the morning with Helena since she is being vented this afternoon. The medical staff has assured Aaron that this is a pre-emptive move since Helena will have to be vented before the surgery anyway; they just wanted to do it now to control her breathing, and to make sure that there is no fluid build-up in her lungs. Even so, this is pretty tough, and it makes the whole situation even more real. When they return tomorrow, there will be more machines in Helena's room.

Dorothy, Karla and David came to visit Helena at about 10 am, before K & D headed back to Decorah.

Helena was really at the top of her game today--she was so alert, and was able to look around at her visitors and her surroundings. She has big, beautiful eyes. It's likely they'll be blue, which shouldn't come as much of a surprise to most of you.

I (Karla) talked to Aaron this morning, and he wanted to pass on greetings to all of you who are praying for them and keeping tabs on Helena's progress. He and Mary have just been too exhausted to write directly--the last few days have been "like running a marathon"--but they are reading your comments and really, really appreciate your prayer and support. Aaron says that your "prayers have been helping--[they've] kept us going," and that being on the receiving end, he is getting a glimpse of "the true meaning of prayer." He sends special thanks to the LSTC (Lutheran School of Theology) community, Salem Lutheran Church in Sandwich, IL, St. John's in Somonauk, IL, Zion Lutheran in Buffalo, MN, and Good Shepherd Lutheran in Moorhead, MN. [Editor's note: I wonder if we should make this prayer effort more ecumenical! :)] He realizes that this list is not exclusive, and that there are so many of you out there thinking about them. Aaron says that family has been invaluable this week--they have really been a major source of support.

Aaron also says that the nursing staff at Christ "has been wonderful...They really love the babies here." He added that "the doctors have been reassuring and helpful," and that he knows they "are at a good place. Dr. Ilbawi [the surgeon who will operate on Helena] is one of the best in the world—He’s like the Bono of the surgical world.”

Aaron hopes that he and Mary can rest and relax this afternoon and evening, because tomorrow is going to be a big day at the hospital. They will be meeting with the surgical team to get a detailed care plan, talk about the number of surgeries Helena will need, and go through the process of this week’s surgery. They will also receive confirmation as to the date of Helena's surgery this week (they think it might be Thursday or Friday, but the doctors have said that it might be as early as Tuesday). In addition, they plan to do a blessing service for Helena tomorrow with their pastors, John, Judy, and Dorothy.

"We hope to be able to say more as the week goes on," said Aaron, "but in the meantime, our address is: 1100 E. 55^th Street, Chicago, IL 60615."

Just to recap the situation, Aaron outlined what he knows so far. In the surgery this week, the first of two or three this year, doctors will: 1) reconstruct Helena's aortic valve with “spare parts from another valve”, and they will use artificial parts to fix the valve from which they’ve taken the parts; 2) fix the aortic arch which is interrupted--this is what brings blood to the lower extremities. This whole process is called the Norwood Procedure, and they will perform a variant form of this operation (they don’t need to rebuild a new ventricle because of the hole (8mm) in her septum, which separates the two lower ventricles. Surprisingly the hole has actually been a good thing right now--it will be fixed when Helena is about a year old.)

NORWOOD PROCEDURE

The Norwood procedure is the first in a series of three open-heart surgeries that gradually improve certain heart defects that are present at birth (congenital heart disease). It is most often used to treat congenital defects in which one or both of the lower chambers of the heart (ventricles) are defective. The Norwood procedure cannot cure the underlying heart defects, but may enable young patients to regain their health. The term "Norwood procedure" is sometimes used to refer to all three stages of the surgeries together.

Each of the three surgeries is done at a different age, beginning from infancy and continuing into the toddler years. The first two surgeries (Stages I and II) are used to temporarily relieve blood flow problems to and from the lungs. The third surgery (Stage III) is used to further improve circulation.

The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Despite the complexity of the procedure, many children go on to live a relatively normal lifestyle after completing all three stages.

Excerpted from: http://heart.healthcentersonline.com/pediatricheartsurgery/norwoodprocedure.cfm

POST #4

Saturday evening...

Mary visited Helena during the evening and brought some of the containers of colostrum (substance that precedes milk) that she has been pumping. She will not be able to actually feed Helena with her milk until sometime after the surgery, but she has been encouraged to swab the area around the baby's mouth with the colostrum to help build up the baby's immunity. Helena absolutely loved the taste or smell, and as Mary swabbed she kept trying to lick the Q-tip to get some in her mouth. "Mom, right here, in my mouth," she seemed to be saying.

Mary and Aaron had a more restful night--both slept well, and Mary's blood pressure has decreased significantly (the doctor prescribed BP medication yesterday afternoon). Her pain is also easing, and she is optimistic that she will be feeling much better as the week progresses.

POST #3

Another day...

Saturday, August 26, continued to go very well. All of the grandparents have been able to hold baby Helena, as well as Karla and David.


Aaron and Helena










Grandma Judy and Helena
















Grandma Dorothy, Mary, and Helena













Grandpa John and Helena (Thurs., Aug. 24)













Karla and David with Mary and Helena

Welcome to Helena's site! If this is your first visit, Scroll Down this page to Aug. 25 for the beginning of the story.

POST #2

Helena's tough beginnings...

Aaron and Mary spent Helena's first day, Thursday, Aug. 24, with her in their room at the hospital. She continued to look at them and squawk throughout the day. What a beautiful, perfect, lovely baby, they thought as they admired her. Aaron's parents, John and Judy, joined the new family at about noon; they had been staying at Mary and Aaron's apartment in Chicago, getting it ready for them.

At one point in the morning, when the nurse was doing a routine check on the baby, she thought she heard something irregular in her heartbeat. She mentioned that there might be a murmur, and then took the baby in and out throughout the day for further checks. An EKG was done, among other tests--all of which Mary and Aaron believed were routine.

By late afternoon, a Rush-Copley medical team with a neo-natalogist came to Mary's room, and told them that Helena had some very serious heart problems, and that they would need to take her immediately to the Neo-Natal Intensive Care Unit. It was hard news for the new parents and grandparents to digest; Mary asked, "Do you mean right now, from my arms?" The doctor said yes. He briefly explained what some of the issues were, but said that a cardiac specialist from Lutheran General in Chicago would be calling shortly to describe the problems in more detail.

Things started moving into high gear as they took Helena to the NICU and hooked her up to various machines and monitors, and prepared to have her transferred to Advocate Christ (Hope Children's) Hospital. Sometime after 5:00 pm they received the call from the specialist, and they learned that baby Helena had three serious issues with her heart: 1) there was a hole; 2) there was a valve problem; and 3) there was an artery problem. Surgery would need to be done within the very near future, pending more tests.

By 9 pm on Thursday night, the team from Christ Hospital arrived and prepared Helena for the 40 minute trip by ambulance. Aaron accompaned Helena; John and Judy followed. Aaron said that they made the trip in 37 minutes, with the lights flashing the whole time. They were able to stay at Christ until they were sure that Helena was settled into the PICU (Pediatric Intensive Care Unit). At around midnight, they headed back to the Hyde Park apartment to get some sleep. Ironically, Christ is the hospital where Aaron is supposed to begin his one-year residency as a chaplain on Friday, Sept. 1.

Mary, meanwhile, was still at Rush-Copley. Because of the C-section, she couldn't leave the hospital quite yet. Karla and David arrived from Decorah at about 10 pm to be with her--Karla stretched out on the chair next to Mary's bed, and David got a room at the Super 8. In order to help her sleep that night, the doctor prescribed sleeping medication.

On Friday, August 25, Aaron and John returned to Christ Hospital to spend the day with Helena. She has her own room in the PICU, and they took turns holding Helena throughout the day, and talking to the different medical professionals as they stopped by. Aaron learned that the baby's surgery would probably take place on Thursday or Friday (Aug. 31 or Sept. 1). They also learned that Helena's heart defect was a much longer-term problem, and that she will in fact have a total of 2-3 surgeries this year, with more to follow at key transition points in her growth (5 yrs. old, 10 yrs. old, 20 yrs. old) and probably every 10-15 years after that. The doctor said that Helena will not be an olympic swimmer, but most other things will not get in her way.

The first surgery that will take place this coming week will deal with two of the three problems mentioned above--those involving the valve and the artery. Surgery to deal with the hole in her heart will take place in 6-12 months. The longer terml, ongoing surgeries are connected to the valve problem--new valves that match the size of her heart will be re-placed throughout her life. This first surgery is called the "Norwood Procedure." 1-2% of the babies have the kind of heart problems that Helena has, so the procedure, while not common, is not unheard of. The surgeon at Christ who will be performing the surgery is one of the world-renowned specialists in this area, and he is very confident about Helena's prospects.

The surgery will take 6-8 hours, and will involve two surgeons--the specialist and and an assistant. Helena will stay in the hospital for about another three weeks after the surgery; the final week or so will mark a transition between the NICU and a regular ward.

Right now, Helena is doing remarkably well. She is healthy in every other way, and has moved from squawking and staring to sleeping a lot, just a like a regular newborn. Mary will not be able nurse her until after the surgery, so right now, Helena is receiving nourishment through her naval. Aaron calls the liquid "Super-Gatorade".

Mary was released from the hospital early--Friday afternoon instead of Saturday morning. Karla and David drove her directly to Christ so that she could hold the baby for a little while on Friday evening. She was so relieved to see the baby, and they both seemed to relax in each other's presence.

Mary's mom, Dorothy, arrived on Friday afternoon, so there are now a sizable group of concerned relatives and friends helping to make sure that Mary, Aaron, and Helena, are doing alright.

Today, Saturday, August 26, Helena continues to do well. Aaron, John, and Dorothy have been at the hospital, and Dorothy met her grandaughter for the first time. Mary will visit later in the day; we are all "encouraging" her to take it easy, and to make sure that she allows herself time to heal. Her blood pressure has been running high, and the doctor has told her that she needs to sleep and eat and relax. She is also working on pumping milk to store for the baby--as of this afternoon, this is starting to work better.

If you have questions or you'd like to leave greetings for Mary, Aaron, and Helena, please do so using the comment feature. Karla will be helping to maintain this blog site, especially throughout the next couple of days. Mary and Aaron will write when they can.