Thursday, August 31, 2006
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.
Wednesday, August 30, 2006
Tuesday, August 29, 2006
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.
Monday, August 28, 2006
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)
Sunday, August 27, 2006
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)
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. 55th 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.)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.
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
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.
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
Saturday, August 26, 2006
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.
Friday, August 25, 2006
They arrived at the hospital at about 9 am on Wednesday, August 23, so that Mary could be induced--she was 6 days overdue. She started the process at 10 am, and her contractions began at about 2 pm. They continued to intensify throughout the evening, and it looked as if she was nearly ready to deliver by about 11 pm or so. During the next hour, the medical team became increasingly concerned about the baby's heart beat--it seemed to fade in and out. Shortly after midnight, they decided they would have to do a C-section, and Helena arrived within 30 minutes. Aaron was present throughout, and held himself together quite well, only asking after the delivery, "Is she supposed to be that color?"
By 4 am Mary, Aaron, and Helena, settled into a room on the maternity floor, and tried to get some sleep. They passed Helena back and forth for the next few hours--she squawked and looked at the them continuously. Does this baby sleep, her parents wondered? Telephone calls to family started a little after 7 am.