Our Journey – Blog

January 10, 2007

The great news is we are having a little boy (yeah!). We recently learned that he has a congenital heart defect called Transposition of the Great Arteries (TGA) and an Atrial Septal Defect (ASD). Transposition of the Great Arteries (TGA) is a congenital (present at birth) defect in which the primary arteries (the aorta and the pulmonary artery) are transposed, with the aorta in front of and to the left of the pulmonary artery; and the left and right ventricles transposed. An Atrial Septal Defect (ASD) is an abnormal opening in the wall (septum) that divides the two upper chambers of the heart (atria). This opening may allow blood from either side of the heart to cross into the opposite atrium.

We are scheduled to see a pediatric cardiologist for an echocardiogram on January 16th at 10:00am. This appointment will give us more information and let us know if there are any other problems with the baby’s heart that the ultrasound could not detect.

The baby will need to have open heart surgery to fix these problems. The operation is called an arterial switch operation and is a corrective procedure performed within the first few weeks. The overall goal of the operation is to restore the great arteries to their correct positions within the heart. We will learn more about the surgical plan in February when we meet with the heart surgeon. The great news is there is a very good success rate (over 90%) with this surgery. I will be enduced at the hospital on a date yet to be specified (most likely the end of April). I have been told I will deliver the baby naturally; they won’t do a c-section unless there are complications with the delivery.

We will be transferring our prenatal care to doctors in Houston . This is because the baby will be delivered at the Texas Children’s Hospital in the Children’s Heart Center . Texas Children’s Heart Center encompasses four floors in the hospital and has specialized cardiologists and heart surgeons. They are ranked as one of America ‘s best pediatric heart centers and we are very fortunate to be so close.

Jon and I are doing well. We believe this is in God’s hands and we trust He will take care of our little one. Please keep us in your prayers. Thank you for all of your support and concern!

January 19, 2007

Hello All,

Well, it is time for an update on the baby. We had an appointment today with Dr. Finnegan who is a cardiologist. The echocardiogram confirmed the baby has Transposition of the Great Arteries (TGA) and a Ventricular Septal Defect (VSD). Dr. Finnegan did not see any other problems or reasons for concern – much to our relief. He discussed the Arterial Switch Operation and reaffirmed that there is a great success rate with this surgery.

They measured the baby and he is growing perfectly. Today he was 1 pound 11 ounces. He is in the tenth percentile.

We will be meeting with our new obstetrician Dr. Karolina Adam, in Houston, on February 16th and are in the process of scheduling an appointment with a cardiologist in Houston for that same day. We won’t meet with the heart surgeon until about a week before the surgery.

We expect the baby will have his surgery 3 to five days after he is born, unless there is some kind of complication. The baby will have open heart surgery and will need to be put on a heart and lung bypass machine while they stop his heart. During the surgery they will reposition the main arteries and repair the hole(s) in his heart. The surgery usually lasts about 6 hours. We expect the baby will be in the hospital for 2-3 weeks after the surgery.

Jon and I are remaining positive and trust that this is in God’s hands. We really appreciate all of the support and prayers. Please feel free to pass this information along to anyone who is not yet in my address book.

February 16, 2007

We are now established with our new doctors in Houston. We met with our obstetrician Dr. Karolina Adam and have a better idea of what we need to do. We also met with our new cardiologist Dr. Lantin and have more information about the baby’s heart condition.

Our obstetrician advised us to temporarily “move” to Houston at the end of March so we will be close to the hospital if I go into labor early. We will be scheduled to deliver the baby April 18th or 19th. She performed an ultrasound of the baby and he is growing very well. He is 2 lbs 11oz and is in the 42nd percentile now (great news)!!

Our cardiologist did an echocardiogram of the baby that took over two hours and followed that exam up with a 3-D ultrasound to confirm her findings. She confirmed the baby has Transposition of the Great Arteries (TGA) but she does not believe he has a Ventricular Septal Defect (VSD). She said that she believes his ventricular septum is intact but that he may have slight overriding of his two great arteries. She measured his arteries and said they are well formed and look to be equal in size. She did not see any narrowing or blockage. This is all very good news because it will mean his operation is likely to be a bit less complicated. She told us he is a great candidate for the Arterial Switch Operation and she believes he will do very well.

Our next appointment will be in two weeks and should be a routine check-up. In four weeks we will have another echocardiogram and a surgical consult where we can actually meet with the surgical team and tour the cardiac intensive care unit.

We were given a tour of the Pediatric intensive care unit, milk bank and Ronald McDonald House and the facilities are really amazing. We are now working on finding a place to stay, close to the hospital where we will be comfortable and Jon will be able to get some work done.

Jon and I are now more confident than ever that we have made the right choice in moving care to Houston. God is answering our prayers. We really appreciate all of the support we have received from our wonderful friends and family. Thank you!!

March 15, 2007

Well, we are scheduled for a c-section on Wednesday April 18th at 7:30am. Little Luke will be born at St. Luke’s Hospital in Houston, and then moved over to Texas Children’s Hospital. He is growing very well and is now in the 49.5 percentile! Thanks to everyone for all of your support and well wishes.

April 02, 2007

Hello everyone! It’s time for another update. Jon and I have settled in our temporary apartment in Houston. It’s very nice and we are glad to have some of the comforts of home (stove, washer & dryer, fridge, etc.).

The baby is doing very well. Today he is 5 lbs 4 oz, which is perfect. Our doctor has decided to push the c-section back one week in order to give Luke more time to grow. Our c-section is now scheduled at St. Luke’s Hospital on Wednesday, April 25th at 7:30am.

We had an echocardiogram last week with Dr. Lantin. She said his arteries are good size and that he should do very well with an arterial switch operation. We also met with one of the pediatric surgeons and discussed the operation and what we can expect.

That is all of the news that is fit for print right now. We are anxiously awaiting the arrival of little Luke and do appreciate all of the love and support from our friends and family. Our baby is in God’s hands and we are confident that He will take care of him and us. Please keep us in your prayers.

April 16, 2007

We had an appointment this morning. The baby is now 6 lbs 9 oz. His growth has slowed a little but he is still on track. Most importantly Dr. Adam said the baby looks like he feels good and is happy.

She checked me today and said I am 50% effaced and 1 cm dilated. It is my understanding that I can stay at this stage for some time so I’m going to take it easy and try to avoid going into labor. We are still scheduled for a c-section next week on April 25th. Hopefully little Luke will stay put like he is supposed to. 🙂

We will keep you posted as things progress and as soon as we are able to we will post pictures on this site. Jon and I are nervous and excited at the same time. Thanks once again for all of your prayers and support. It means the world to us!!

April 27, 2007

We are happy to announce Luke Jonathan Hundley was born April 25th at 8:34am. He was 6 lbs 12 oz and 19 1/2 inches long. To everyone’s surprise Luke came out bright pink and crying. He was able to breath on his own immediately and Daddy followed him to the ICU.

Luke’s first surgery (to help oxygen mix in his body) went very well. He is breathing on his own and has been holding his oxygen counts in the high 80s and low 90s. The doctors removed his feeding tubes and are letting him bottle feed until his next surgery.

The surgical and cardiology doctors will be presenting his case on Monday and a panel of 40 experts will make the final recommendation on how they will proceed. As soon as the surgical recommendation is made Luke’s operation will be scheduled (probably in the next 5-7 days). He is doing very well and we are truly blessed.

I will be discharged from the hospital on Saturday. Jon and I don’t have good cell phone service in the hospital. Our phones usually don’t ring and we can’t call out. If you don’t hear back from us that is why.

Thank you for your continued prayers and support. We will try to update everyone as soon as his surgery is scheduled.

April 30, 2007

Luke’s surgery was originally scheduled for Friday but tonight we found out he will have surgery Tuesday morning (tomorrow) starting at 7AM. Luke is doing great and he has been drinking from the bottle since Saturday.
He has also gained weight and all his test have come back very good.

The surgery should last about 8 hours and he should be out around 5PM. Please keep us in your prayers tomorrow.

May 01, 2007

Great news! Luke’s surgery is done and he did very well. He was taken off bypass around 2:30PM. We are waiting to talk with the doctor who did the surgery — he should be in soon. Jon and I will be able to see Luke in the recovery room in about an hour.

So many people have been praying for our little boy and are so grateful for that. Thank you to everyone for your support. Please continue to pray for a speedy recovery. We will post an update again soon.

May 01, 2007

Unfortunately Luke has had some problems. Twenty minutes after he was taken off bypass he had an episode with his coronary arteries. The doctors were able to bring him back pretty quickly and they decided to close him up and take him to the recovery room.

Jon and I were taken into the room where Luke was recovering to visit 45 minutes later. While Jon and I were in the room Luke’s blood pressure started falling and he had another coronary event. The doctors had to resuscitate him and they were able to stabilize him. A team of doctors came in and evaluated him and decided he needed to be taken back to the operating room. As we understand it his coronary arteries (they supply blood to the heart) are not functioning correctly after they were switched.

We are waiting on news from the doctors. Please continue to pray for our little boy. We will update you as soon as we know more.

May 01, 2007

Luke is out of his second surgery. The doctor is leaving his chest open to reduce the stress on his heart. They moved an artery on one side that may have been compressing his coronary artery. They don’t know what is causing problems with the pressures in his heart but are going to continue medications and monitor him through the night.

We are not sure what the next steps will be but we’ll update you when we learn more. Please continue to pray for Luke.

May 02, 2007

Luke did well through the night with his chest still open but this morning the doctors were worried because his blood pressure was dropping. He is currently being given special medication to help with his blood pressure.

Luke is a very strong boy and this is a critical time for him while his heart heals.

May 02, 2007

Luke is still unconscious and on drugs to paralyze him so he does not stress his heart. The doctors anticipate keeping his chest open for at least three days. This is because he has had two operations and his heart is swelling. His blood pressure is still a problem because of the stress of the operation.

Luke had an echocardiogram this morning and his heart function has improved a little but is still not functioning normally. He has had some dialysis today and will continue to until his kidneys can handle things on their own.

Luke has one-on-one care with one nurse every 12 hours. The nurses and doctors at Texas Children’s hospital are very caring and take a lot of time to explain things to us. We are so glad we made the decision to come to Houston.

Luke seems to be stable for now so we won’t have a lot to report for a while as his heart just needs time to recover. Please pray for him, as this is a very critical time.

May 03, 2007

Luke has been improving every day. His heart rate has finally gone down and his blood pressure is normal. He is on a lot of medication to help with his blood pressure and heart rate but his heart muscle is getting stronger and healing. Some of his medications have been reduced and he is doing more of the work on his own.

One of his doctors told me that she is planning to close his chest tomorrow. They will watch him for a while and make sure he remains stable. The plan is to slowly take him off medications and machines until he is able to function without them.

We are not sure when the breating tube will be removed but when that happens they will start to wake him up. As soon as he is stable and able to eat he will be moved to a different CVICU where Jon and I will be able to share a private room with him.

We feel so blessed that he is making progress and we know that all of the prayers that have gone out for him have helped. Please continue to pray for Luke.

May 04, 2007

Luke’s chest was closed this morning and he tolerated the procedure well. The doctor didn’t see any problems with his heart (no leaking, etc.) and said that he is starting to take a turn for the better. They are not going to make any major changes right now — they want to monitor him and make sure that he remains stable.

It is so comforting to see his chest closed; Jon and I could not be happier. We know that your prayers have made a difference and we really appreciate your continued support. Luke is a fighter and is making good progress. Please continue to pray for his speedy recovery and that he will feel comfortable and his pain will be controlled.

Jon and I could not make it through this without the support of family and friends. We do believe that God is taking care of Luke and we trust in Him to keep our sweet baby safe. We will update everyone as we learn more.

May 05, 2007

Luke is making progress. He is still asleep and paralyzed because the doctors are decreasing some of his heart medications and they don’t want his heart rate and blood pressure to fluctuate too much while they are making changes.

Last night they were able to turn off one of the medications for his blood pressure and decrease two others. They also decreased the amount of breaths and level of oxygen they are giving him and he is holding his oxygen saturation and taking some extra breaths on his own. He is still on dialysis but his own urine output has been good. Luke has been having some irregular heartbeats and they are trouble shooting that with magnesium and electrolyte replacement. I don’t think it is out of the ordinary for this to happen after major heart surgeries.

Overall Luke is taking baby steps toward getting better. The doctor said we still have a long road ahead of us but he thinks that Luke is over the really hard part and should keep improving.

Again we thank everyone for your prayers and support. God is the ultimate physician and he is healing Luke’s heart. Please continue to keep him in your thoughts and prayers.

May 06, 2007

Luke has been making steady progress. He is now off dialysis, nitrate and another machine that was monitoring his brain activity. Now that his chest is closed they are letting him wake up and prepare for his breathing tube to be removed (probably tomorrow). They put a feeding tube down his nose this morning and he is getting his Mommy’s milk.

He is opening his eyes a little and trying to cry. However, with the breathing tube he can’t make any sound. The doctors want him to have very little stimulation so Jon and I sit in his room quietly and hope he will sleep as much as possible.

Luke’s heart is still having arrhythmia but we will have to wait and see if it goes away on it’s own or if they will need to give him medication to stop it. Overall, Luke is doing very well and is still improving.

I would also like to send a prayer request for a family who lost their baby yesterday. His name was Andres and he was two rooms down from Luke. Please pray for his family that will find comfort during this very difficult time.

Thank you all for your continued prayers and support. Jon and I log onto the Carepage often and really appreciate all of the words of encouragement. Please continue to keep Luke in your prayers.

May 07, 2007

Luke had a big day today. He was taken off the breathing machine and he is doing really well. Jon and I were so thrilled to see his sweet little face again. Luke was awake for about three hours this evening. He laid calmly staring at Mommy & Daddy, cooing and sucking vigorously on his pacifier — trying to figure out how to get some milk out of it.

The doctors started feeding him through a tube in his nose again tonight. Tomorrow they will let him try a bottle. They are planning to take him off of two more medications he is getting through his IV and then they may remove the IV and pacing wires that are still in his chest. After that happens Jon and I will be able to hold him! We are really happy!

If Luke continues to do as well as he is, we may be able to move down to the ICU on the 15th floor by Wednesday or Thursday. The 15th floor is where we will share a private room with Luke to learn how to take care of him. We expect to stay on the 15th floor for 7-10 days.

We feel very blessed that Luke is doing so well. God is great! We cannot thank you enough for all of the prayers and support.

May 11, 2007

Luke is doing very well. He is graduating to a crib and private room in a different intensive care unit today. Jon and I will be moving in with Luke and learning how to care for him.

He is now off all of his IV medications and is taking medication by mouth to control his heart rate and blood pressure. The medicine is also helping with his arrhythmia issues. Luke’s heart function is still not normal but it is getting better every time they do an echocardiogram. He is now eating by bottle every three hours and is taking a little over an ounce at a time. We will probably be in the hospital another 7-10 days.

I finally got to start holding Luke yesterday and it is the best feeling in the world. Jon and I are thrilled that Luke is making such good progress and we cannot wait to take him home. God has truly blessed us. Thank you all for your continued prayers and support. It has meant and continues to mean a lot to us.

May 14, 2007

Luke is doing very well. In fact, he is doing so well the doctors are thinking about letting us take him home tomorrow. Of course it will be to our apartment in Houston that is 5 blocks from the hospital… but one step closer to coming back to Austin.

Luke is still on oral medications to help with his heart function and will be for some time. He is eating well and gaining weight like he is supposed to. He is very alert and is starting to smile and do other cute newborn stuff.

Jon and I are thrilled but terrified about taking him home. We have become somewhat attached to the monitors that beep when something funny happens. We will now have to depend on our own eyes and ears which is a little intimidating.

God has really blessed us with baby Luke. We will keep you updated on his progress. Thanks for all of the prayers and support.

May 17, 2007

Luke is half way to Austin. We’re finally home at our temporary apartment in Houston. We have an appointment on Monday to have an echocardiogram and meet with Luke’s cardiologist. At that point we should have a good idea if we can return home to Austin, or if we should stick around Houston awhile longer.

Luke is doing great. He is eating really well and getting used to his new quiet surroundings. Mom and Dad are still getting used to getting up every 3 hours but we’re hanging in there. Luke has a lot of different medications he needs to take at different times but we have it figured out.

Luke’s chest is mostly healed and he no longer has to cry out in pain when he sneezes or gets the hiccups. His stitches were taken out and you can hardly see a scar. The doctors told us Luke can’t be around many people or other children for 6 weeks because he has a high risk of infection.

Thank you for keeping Luke in your prayers. Please pray that he will have a good checkup so we can bring him back home to Austin.

May 26, 2007

We are finally back in Austin and we are thrilled! Luke had a good check-up with his cardiologist in Houston and he let us come home. His echocardiogram showed improved function of his heart muscle but some leaking of his valves. The doctor said that most babies born with TGA have leaky valves — they will just have to monitor him for the rest of his life.

Luke is now 8 lbs 2 1/4 oz and 21 inches long. A cardiologist here will follow him, who trained at Texas Children’s Hospital. Luke’s first appointment with Dr. Patt will be next Tuesday.

We want to thank everyone for the support and many prayers. This was honestly the most difficult thing that Jon or I have ever had to go through and we could not have done it without our friends and family. We check the CarePage all the time and have truly appreciated all of the words of encouragement.

God has truly worked a miracle with baby Luke. We are so very blessed.

June 21, 2007

I’m sorry it has taken me so long to update this site. No news is good news though. Luke is doing great! He is 10 lbs 9 oz and 22 1/8 inches long.

He is established with his new cardiologist in Austin and we really like Dr. Patt. We are really happy to report that Dr. Patt is planning to take Luke off all his medications in a couple of months. Also, all of the tests they have done on Luke have come back with good results.

August 16, 2007

Just a quick update to let you know Luke is doing great. He is almost 4 months old, 23 1/2 inches tall and 14 lbs 13 1/2 oz! He is a butterball.

Luke is smiling, sticking out his tongue, babbling, grabbing things with his hands and is so darn cute. Luke’s fine motor skills are right on schedule but his gross motor skills (raising body, holding head up, etc.) are a bit delayed. This is to be expected due to what he went through. We have a physical therapist working with Luke to help him catch up.

We are not worried about the gross motor skill delay because Luke was enrolled in a special research study at Texas Children’s Hospital. They monitored the oxygen levels to his body and used a separate strip to monitor the oxygen supplied to his brain. They also performed a 72-hour brain wave study and an MRI before and after his surgeries. It is so comforting for us to know Luke’s oxygen levels never dropped to a dangerous level — not even during those scary coronary events he suffered.

Luke has an appointment with his cardiologist at the end of the month. Hopefully he will be taken off his heart meds at that time. We’ll keep you posted.

September 02, 2007

Luke had his 4-month appointment with his cardiologist last week. He was 15 lbs 15 oz and 25 2/3 inches tall.

His doctor noticed more leaking around his pulmonary artery than he saw in the echocardiogram last time (The leaking is due to Luke’s second emergency operation where they moved that artery higher up his heart). However, he was not too worried about it. He said he would just monitor it for now as he really won’t know if it will be a problem until he grows. Other than that he said Luke looks and sounds great.

Luke has started to lift his head to about 45 degrees and can now roll from his side to his back. His physical therapist has set a goal to have him sitting up and crawling by the time he is 6 months old. Jon and I are excited at the prospect… but also terrified. I guess we’d better get this house baby proofed soon!

We continue to be grateful to God for this precious baby boy. He is an inspiration and amazes us each and every day. Thank you for all your continued prayers and support. We are so lucky to have such great friends and family.

October 25, 2007

Luke is 6 months old today! He just had his 6-month check-up with his pediatrician and he is 17 lbs 10.5 oz and 27 1/2 inches tall. He is in the 85th percentile for height and 55th percentile for weight. I know… my jaw dropped too!! He is such a butterball.

Luke is still working with a physical therapist once a month. He is starting to sit unsupported for longer and can roll from his stomach to his back now (Daddy is very proud of the fact that he taught Luke to roll over… too cute). Luke is doing so well it’s hard to believe there was ever a problem with his heart. He is now off all heart medications and we couldn’t be happier.

He will see his cardiologist again December 20. Hopefully Luke will relax and let them get a good echocardiogram this time. I’m keeping my fingers crossed. We will let you know what we find out about the leaking we were worried about last time. Thanks for keeping Luke in your prayers. God has been so good to our family and we are so grateful.

December 21, 2007

Happy holidays to you all! Just a quick update to let you know Luke had his cardiologist visit yesterday.  He was a perfect angel during his echocardiogram — smiling and babbling to the tech the whole time.  He tried to guide her hand through the scan and although she appreciated his help, she didn’t really need it.

Luke’s oxygen stats were 100% and his blood pressure and heart function looked great.  His arteries did not show any narrowing (which is awesome!).

The doctor saw his leaky valve again and is monitoring it.  Right now it’s mild and isn’t an immediate concern.  He’ll go back for a follow-up echocardiogram in six months and may have to start taking Enalapril again so his heart won’t have to work as hard (because of the the leaking). He is also on a 24-hour halter monitor to ensure he isn’t having arrhythmia issues since they discontinued his medication for that two months ago.  He hasn’t had any symptoms so we’re confident his test results will be good.

Luke is growing and changing so fast.  He has a really wonderful laid back personality and loves to smile and laugh.  He is sitting up pretty well now standing with our assistance.  He REALLY doesn’t like to be on his stomach so we don’t see crawling in his immediate future.  He may be one of those babies that skips the crawling stage altogether.  He has two bottom teeth now and is a really good eater.  He figured out the pincher grasp and can eat cheerios and other finger foods by himself.

We are really looking forward to our first Christmas with Luke.  He is our miracle baby and the greatest gift we could ever ask for.  We are so thankful to have so many wonderful people in our lives.  Thank you for all of your prayers, love and support.  May your new year be full of joy, prosperity, love, peace, compassion and healing.

June 22, 2008

Luke saw the cardiologist last week and everything looks good. His Neo-Aortic valve is still leaking but it hasn’t gotten worse. Dr. Patt is starting Luke on a medicine called Enalapril. It will help his heart function better and keep the valve working as long as possible.

Luke is now in the 90th percentile for height and the 50th for weight.  It’s hard to believe he’ll be 14-months in a few days. He can walk by himself but isn’t too excited about doing it. He really prefers crawling. His favorite words are tractor, ball and Da Da. Everything with wheels is a “tractor” and all round things are “ball” as far as he is concerned.

June

June 3, 2010

Luke had his annual cardiology check-up today and all is well. His issues are: 1) his aortic root is a bit bigger than it should be and 2) he still has a mildly leaky aortic valve (not new news to us and just something they will monitor). He is on a 24-hour halter monitor to check for arrhythmia issues (which we don’t expect) and they increased his medication dosage a little to account for growth over the last year. All in all a great check-up!

His cardiologist said he looks and sounds great, gave him no activity restrictions and even gave the go ahead for Luke to play soccer. He did say with his aortic problems he should not play contact sports like football when he is a teenager (which is fine with me!).

Luke is excited about becoming a big brother but is still a bit confused about all of this pregnancy stuff. Our pregnancy with “baby girl” is going great. I’m 22-weeks now and had a high resolution ultrasound of her heart and other organs at 20-weeks. Everything looks great! Our cardiologist said we can opt for a fetal echo-cardiogram to put our minds at ease. It’s probably not necessary but something we will consider.

That’s all the news for now! 🙂

3 thoughts on “Our Journey – Blog

  1. Hi! I got to your blog through Noah’s blog (we’re in Utah)and I was so happy to hear how well Luke is doing. My Matthew had TGA and an ASD 3 1/2 years ago! I can’t believe it’s been so long. He is more wild than any child I know (he has 3 big brothers) and you would never know what his first few months entailed. I’ve had a healthy baby since him as well – so it’s possible! I love to hear stories like yours and wish the best to your family and I can truly tell you that I know what you’re going through and it’s tough. – Kristen Evers

  2. If you don’t mind, would you please email me about your c-section at St Lukes with Dr Adam? I have been considering using her and I’d love to talk with someone who has used her and the hospital.

    Sarah springolife at trostfamily dot org

    Thanks!

  3. I found your story on utube and after I wiped up all the tears, I found the link to your web page. Very impressive! My little boy was recently diagnosed with TGA + VSD inutero. We are 28 weeks along and have been learning all about the surgery so we are as prepared as possible for when he arrives (Due Date is Dec 14th). It is wonderful to see so many positive stories to help give us the strength to work through our first huge parenting venture. Thanks again – Luke and your website are inspiring.

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