Incision & Bypass

11:15 am. Logan has had his incision and everything is going according to plan. He has been on bypass now for about 30 minutes, and everything is running smoothly. Both Dr Carrie and Nurse Julianne came out for the update. Dr Carrie said that Logan has a thymus, thus they canceled the blood test for St DiGeorge disease (one less thing to worry about!!!). Looking at the charts, they said that Logan will need to have a pulmonary valve of 8 mm in order for him to do the valve-sparring technique (although through the echos we haven't been able to get it higher than 7 mm). So more than likely he'll have the transannular patch (which will mean future surgeries), but we won't know until they get in there and physically measure it for sure. Kireta and I have been preparing for this as well, so at this point, we just want no major complications. The next step is for them to open up the right side of the heart, and start performing the necessary corrections. Look for an update in an hour.

Update to surgery

The time is 10:11 am as I write this. Dr Carrie came out to give us a personal update this morning. She informed us that Logan took to anesthesia well, and no further medications were necessary. His oxygen count two hours prior to surgery was all the way up to 88, but just before surgery had fallen again down to 78. Also, his hemoglobin was high, which is another sign that we are doing the surgery at the right time (as I had been worried that we were putting him in too early). It took a little longer to get all of the "lines" in Logan this morning, but the breathing tube went in without a hitch. As we speak they are preparing him for the incision. Dr Carrie also informed us that since they are tapping an arterial line, she's also going to send his blood away to be examined for St DiGeorge disease (a disease that is a chromosomal anomaly in the 22nd chromosome). Since it's highly unlikely that he has this disorder, I'm not going to worry everyone with the details of this disease, but just be aware they are screening him for it because of his tetraology of fallot.

The Big Day

Good morning everyone. Today is the big day, the day of little Logan's surgery. I'll try to keep everyone as up-to-date as I am able, please bear with us:) The time right now is 7:07 am, MST. Kireta and I checked in at 6:00 am, and the surgery is planned at 9:00 am. We're currently sitting in a private pre-op room, and we've just met with the anesthesiologist and Dr Max Mitchell, Logan's heart surgeon. Dr Mitchell informed us that Logan's surgery should be over around 1:00-2:00 pm or so, pending no major developments. Thanks in advance for everyone's prayers, they really do work! Yesterday Logan had at least five whole churches praying for him, which was pretty special. (Geoff informed me that he's even got a Lutheran Church in East Africa praying for him!!!) Pastor Terri Todd took Logan down to the front of the congregation yesterday, and had everyone pray for him, which was incredibly comforting. That's all for now...

Logan's alert

Alright everyone, here's a new update on Logan! On August 4th we took him into see his pediatrician, Dr Elias. He's up to a hefty 9 lbs, 15 ozs, and his oxygen remained in the high seventies. Last week, however, I received a phone call from Dr Carrie about her conversation with Dr Mitchell (the cardiac surgeon). Dr Mitchell felt that Logan was an appropriate weight for surgery and wanted to up his surgery date to mid-August. Kireta and I were a little disappointed at first, as we wanted to wait as long as possible with the hopes of upping Logan's odds for the valve-sparring technique. After further talking with Dr Carrie, however, we discovered that his odds would more than likely not increase, due to the fact that even though his pulmonary artery might grow, Logan would also, and it's simply a matter of ratio. Dr Carrie was also concerned that waiting until October would put Logan into surgery during prime time for RSV (a respiratory illness). So after much thought on the matter, we decided to heed the advise of the professionals and schedule Logan's heart surgery for Monday, August 17th.

Kireta and I had a chance to meet with Dr Max Mitchell about a week ago. He's a very nice, down to earth gentlemen, and we both feel comfortable placing Logan's life in his care. When we met him, he had actually just come from the same surgery that Logan will be requiring! In fact, the other boy was the same age, with the same size pulmonary artery! When I asked Dr Mitchell about how often he does this particular surgery, he replied that this was the third one this week, and assured me that's it's all he does. That being said, it's still open-heart surgery, and Dr Mitchell informed us that Logan has a 95% chance of no major complications, with an even higher mortality rate.

I'll now let everyone know a little of what to expect in the short future. On Friday, August 14th, Logan will go in for his "Pre-Op Surgery." This is an all day event, and since they'll be sedating Logan to get a perfectly accurate echo-cardiogram, as well as some other tests, we'll have to stop feeding him at 5:30 am, which should be interesting to say the least:) He'll have his blood tested, followed by a Lateral Chest X-ray. They'll then do another echocardiogram since he'll be knocked out. Kireta will then meet with the Nurse Practitioner that will be giving us an hour by hour update during the day of surgery. (I'll be updating his blog every hour the day of surgery for those of you interested). Kireta will then go on a tour of CICU (Cardiac Intensive Care Unit) and the step down unit or CPCU (Cardiac Progressive Care Unit). Next is an appointment with the Anesthesiologist, followed by another meeting with Dr Mitchell.


On the big day, Monday, August 17th, we'll be arriving at the hospital at 9:00 am. The surgery will last anywhere from 5-8 hours, and we'll be updated every hour by the Physician's assistant. Here's what to expect... The anesthesiologist will put Logan to sleep (this period is called induction). A breathing tube will be placed down his throat and one or more IV's will be established to help maintain Logan's fluids. His chest will then be swabbed with iodine and a perfusionist will operate the cardiopulmonary bypass machine. Open-heart surgery means that the heart will be opened to perform the repair. An incision will be made on Logan's chest, just below his collarbone to just below his nipples to give Dr Mitchell access to the heart. Logan will then be placed on the bypass machine to enable Dr Mitchell to operate. They'll place several special tubes called "cannulas" into his aorta and the right atrium and/or the vena cavae (which collects blood coming back to the heart from the body). Blood is then transferred from the bypass machine where it is filtered, warmed or cooled, and oxygen is added before pumping it back into the body. When the tubes and monitoring wires are all in place, a clamp is placed on the ascending aorta (and at this point forward is called "cross clamp time")

The heart usually stops when the child is cold, but a drug called "cardioplegia" is used to help protect the heart. The heart will also be bathed with a cold saline solution during surgery to further protect Logan. At this point Dr Mitchell will open the heart, and decide whether or not to do the valve-sparring technique, or to do the trans-annualar patch. Sometimes, surgeons attempt to do the valve-sparring technique first, and then see how his heart works when blood pumps through it to see if the patient can handle it. If the heart has too much pressure, however, then the trans-annular patch must be used, but not without a cost. At this point, it becomes a little more complicated, which is why the surgeon has to weigh this option very carefully. (In other words, don't be surprised on Monday when I'm giving you the play-by-play that Logan got the valve-sparring technique, only to be followed by a transannular patch)

Dr Mitchell will have to resect (cut away) the muscle beneath Logan's pulmonary valve, as well as the area above (the supra valve). At this point they'll also fix Logan's VSD (Ventricular Septal Defect) by closing up the hole with Gortex. This will never again need to be fixed. Once the repairs are completed, they will warm Logan back up and the cross clamp will be removed. The heart usually begins beating once it is warm and blood is flowing through it again. Logan will be weaned off the bypass machine at this point, which is a very critical time period. After this period Dr Mitchell will place two to three drain tubes attached to Logan's chest area near the ribs. These tubes help drain fluids that accumulate inside the chest because of the surgery.

Logan will at this point be transferred to the CICU and the next 72 hours are critical. Kireta and I will be able to be right by his side, including modest sleeping accommodations. After about 2-3 days in the CICU, Logan should be transferred to the CPCU. We'll continue to keep everyone updated as best as we are able. Logan should be out of the hospital entirely in one weeks time, and they expect a total of six weeks to recover. (Good thing Logan's not crawling around all over the place...Try telling an infant to "take it easy!")

Never wanting to end a post on such serious news, I'll update you on some remarkable progress by our beautiful boy! First, as you can see, Logan has begun smiling! It's so cute when he does this, and it's awesome when we can capture it on film. Also, he's begun cooing which is a relief, because his cry can be quite shrill! Also, Logan has rolled over once!!! He did it a day before he turned 8 weeks! He beat Noah! Way to go Logan!!! Logan never ceases to amaze us and we are so grateful to have him in our lives! He is such an incredible blessing and we don't know what we'd do without him.

Finally, Kireta's dad and brother came out to see Logan before the surgery and it was refreshing to spend some time with them. Kireta's mom, Barb, will be flying out for the surgery as well, and of course we have Brad and Lisa right here in Parker to help us for support. Thanks for all of your prayers, we need them now more than ever! Please keep Logan in your thoughts and prayers, especially August 17th! That's all for now. We'll keep you posted.

Kireta and I just got back from the cardiologist today. We remained optimistic on Logan's oxygen levels because his coloring looks so good. Unfortunately, the echo cardiogram did not reflect this. Logan's oxygen levels fell to the high seventies, about a 10 point drop in three weeks. Also, the echo confirmed what we had been fearing; that his pulmonary artery has stayed the same size, failing to grow and holding in steady at 6mm. His pressure-gradient has now risen to 76% due to the muscle beneath the pulmonary artery growing.

What this means for us is that Logan's surgery will be much sooner than expected. We were hoping Logan could make it to the 6-8 month mark, but now it looks like it'll be before he reaches 4 months of age. Dr Carrie Villavincencio (our cardiologist who is wonderful by the way) would like to see Logan in two weeks, and we'll determine when he'll need surgery. Currently this could be as early as late August, or as late as late September. We would like to see him go to at least 4 months of age, however, Dr Carrie doesn't want to risk flu season. If you've been reading the blog earlier on, you'll know that he had a 50/50 chance at having a valve-sparring technique done, as opposed to the transannualr patch. At this point, however, since he is still very young and small, his odds have decreased to about a 20% chance of having the valve-sparring technique. (This requiring only one surgery and the transannular of having at least one more between the ages of 3-14). Today we also learned that Logan's valve ABOVE the pulmonary artery (called the supra valve) is also narrow. This means that he has narrowing in all three places (the muscle beneath the pulmonary artery, the pulmonary valve itself, and the supra valve above). We're told this is also common, but nonetheless contributing to his high pressure-gradient. Now for a bit of good news. Logan is up to 9 lbs, 10 oz, and is 21 3/4 inches long. He's growing like a weed, and is doing great with his "tummy time" and other physical therapies. We've decided to go with Dr. Max Mitchell as Logan's surgeon. He's very bright, and has been practicing for 22 years. He's a bit younger than the other chief surgeon at Children's, but we hope this will aid Logan's chances for the valve-sparring technique. Also, by doing the surgery earlier than expected, Logan will not yet be rolling over, which will certainly aid in his six week recovery. We can expect Logan to be in the hospital for one week after surgery prior to coming home. Another great piece of news is that he will not require any life-long drugs, only a bit of Lasik for a few weeks following surgery (which will aid in removing any fluid from his lungs.) Also, if Logan does require the transannular patch, we're hoping that he'll be able to hold out long enough for his second surgery until the technology comes to the USA to do the procedure through his leg (as opposed to another open-heart surgery). Currently in Europe they are doing this procedure through the leg in adults.
Again, your thoughts and prayers are most appreciated!!! Remember, the success rate for this surgery is extremely high, and we know Logan will get through this with God's Grace. Thanks again to all who read this! We'll keep you updated...

Ok, finally a new update on Logan! Sorry for the delay in news, it's just that we've really just enjoyed Logan being a baby! He is so good for us! Aside from having a little temper, his temperament is excellent! He is growing like a weed, but since we haven't taken him back to the doctor's office since 7/5 we don't have a new weight yet (last time it was 8 lbs 5 oz). His coloring is still great, and aside from losing hair (he's still cute though:), he's never looked better. He's definitely more "solid."
Yesterday, early intervention came out to the house to evaluate Logan. Although Logan automatically qualifies for state services given Trisomy 21, the initial eval must still take place. Three women came out, including Laura, his service coordinator, Jenn, his occupational therapist, and Amy, a nurse. Jenn and Amy won't be coming back, but Laura will be our coordinator for 3 years, helping us evaluate Logan's needs.
Up until the age of 3, Logan gets free therapy from the state. From everything that we've read and everybody we've talked to, early intervention is absolutely critical to advancing Logan's development, and helping him advance as much as practical. Again, Logan will more than likely learn things at 1/2 to 1/3 the rate that Noah will learn things. Things such as sitting up, crawling, walking, talking, etc. We were really happy with the initial visit, and can't wait to help Logan as best we can.
Jenn was extremely impressed with Logan's muscle tone (that's my boy!). She said that not only is it fantastic, but that he's actually above normal children. This is remarkable given that both down syndrome babies and congenital heart defect babies have low muscle tone. He was able to hold his neck up on his stomach for quite some time. She was extremely impressed with his leg strength, and we remain optimistic that this will help him develop gross motor skills at a good rate. Jenn would like his short term goals to be able to prop himself up on his elbows while on his stomach, and to be able to roll over in 3 more months. (This actually puts him very close to a normal baby).Jenn also tested his vision and awareness. Again, Logan excelled. He is very aware of his surroundings, and turns his head to where he hears sounds. He also was able to focus on objects in front of him. I was a little worried about his vision previously, because I thought he might have Nystgmus, because his eyes seemed to jerk a little, but they don't believe he has this at this time. Jenn also commented at how mild Logan's down syndrome's features were. In particular, she was keenly aware of his tongue. His tongue does not protrude (unless of course he wants to push it out, which he does alot like most babies). This hopefully will help his speech development in the future, and again we remain optimistic.
At this point, since he is so young, Laura will set up bi-monthly visits with a physical therapist until approximately 3-4 months of age. At that point, we can re-evaluate his needs. Laura explained to us that we can have more or less treatment depending on our needs. Personally, Kireta and I would like to get the maximum amount of help available to help Logan, which will eventually be a speech, occupational, and physical therapist once per week, each for 1 hour.

I was originally very worried about early intervention billing our insurance. It used to be optional to use your insurance to pay for EI, but that recently changed in the last two months. It is now mandatory that developmental pathways (EI in Colorado) must TRY to bill the insurance companies. I had Laura do some research, and she found that Cigna (our insurance) was one of seven that had a large trust fund set up. They will indeed cover the cost, however, it will NOT affect Logan's lifetime maximum! (Currently 1 million) I was concerned because Logan will need a minimum of one open-heart surgery, as well as ALOT of therapy. He could quickly reach this maximum if the state billed him for these services. However, the way Cigna has it set up, this treatment will not affect his yearly maximum, and at that rate will not even cost us a copay!

Here's a great shot of the boys with Grandpa!
Also, Gruncle Rand and Graunt Bette came out to visit us from Cour de Lane Idaho! It was a pleasure to have them out for a few days! We also got to see our Cuzn Katie and her husband Randy P!

Logan's next cardiologist appointment is on 7/30. At that point we'll be taking another echo cardiogram, so please pray specifically that his pulmonary artery is growing!

As always, thanks for your interest and your prayers! We'll give you another update after the 30th!

Logan with Grandpa and Grandma
Hanging out with Grammie and Auntie Ash

Yesterday we took Logan to the Cardiologist. He is up to 8 lbs, 5 ozs!!! What a little eater! Kireta is doing a great job at feeding him every 3 hours, although we now allow a 5 hour window for him to sleep at during the night. His oxygen continued to remain high, at 88. (Remember, if it gets to the 60-70s range, we'll need to do the surgery early). They performed another echo-cardiogram and found his pressure gradiant in the pulmonary artery to be 64%. This is also a good sign, as he was born at 60% (The higher this number goes, the lower his oxygen will go, so they pretty much go hand-in-hand.) The only troubling sign was that his pulmonary artery did not grow as Logan has grown. In fact, it has remained the same at 6mm. Please pray that this grows as it will determine whether or not they are able to do the valve sparring technique during surgery, thus (hopefully) requiring only one surgery. (If not, the transannular patch will be used and he'll need 2-3 surgeries). That being said, Dr Carrie doesn't need to see him for another month, so that's an encouraging sign:) For now, however, we're thankful that his oxygen remains high, he's a healthy weight, his coloring looks great, and that he's yet to have a "tet" spell. Also, his muscle tone is great! He is so strong! This will help him with his motor-skill development.


This week we made contact with a number of down-syndrome groups. We are in the process of setting up early-intervention, which is a free state program to help Logan develop early on. Depending on his needs, he can get a Speech, Physical, and/or Occupational therapist on hour per week, free of charge. They will come directly to our home, which will be a huge benefit! We'll know what Logan needs in the next few weeks, and we'll keep everyone posted!

This week we also contacted one of Lisa's good friends, Michelle Kry. Michelle had two beautiful twin boys, now 14, who both have down syndrome. She will be visiting this Saturday with her husband, Kelly. Michelle has also put us in touch with the Mile High Down Syndrome League (of which her husband was president a few years ago). In the next few weeks we'll be in touch with support groups, etc, that will really help Kireta and I understand as much as possible about DS, as well as the best ways to educate and raise Logan.

I'd like to share a poem that we first saw in the doctor's office, and then later in many books. It's called "Welcome to Holland" by Emily Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"HOLLAND?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Thanks again to all who care enough to read about our Little Logan! Your thoughts and prayers do work, please keep it up! That's all for now, we'll keep you posted!