Wednesday, October 31, 2007

Monkey Boy

Wanted to post a couple of pictures of Mr. Luke in his first Halloween get-up. Our neighbors were very generous with their "treats". Treats that mom and dad will enjoy more than toothless Luke =)

Friday, October 26, 2007

Your prayers at work

Luke's x-ray looked MUCH clearer this morning and Dr. Stefanelli was very pleased (surprised even at how much his right lung had cleared up in just 4 days). He is dropping one of Luke's Lasix doses and we'll do a follow-up x-ray in three weeks to make sure all still looks good. He may make a few more adjustments to his medications at that point, too. Luke shouldn't need any Lasix at this point, but he may be one of those kiddo's who doesn't follow the "rules".

His sat's were also back up to the low 80's, so that was another sign he's feeling better and his lung is clearer. Thank you for all of your thoughts and prayers and keep 'em coming! We are GRATEFUL for them and for you!

Tuesday, October 23, 2007

Lukey update

We took Luke back to the pediatrician's today since he has developed a little cough and after a chest x-ray at Mary Bridge, it looks like he has accumulated some fluid in his right lung. Dr. Stefanelli is hopeful that increasing his Lasix (or diuretic) from one time to three times per day will help push that fluid out. We will go back to Stefanelli's on Friday to get another chest x-ray and see where we're at. If the lung hasn't improved or looks worse, it is most likely Luke would be admitted to treat the fluid with I.V. Lasix, or worst case scenario, a drain tube. We are definitely praying the x-ray looks better on Fri. with this first step!!!

It's interesting, but kids after they have the Glenn (his latest surgery) and then the Fontan (his next surgery), seem to struggle with fluid build-up in their lungs. It has to do with his unique circulation ... no longer is his heart directly pumping blood to his lungs, but the blood basically drains there passively through blood pressure. As I understand it, without the pump action, it is harder for a body to move fluid through the lungs. And of course, heart babies tend to hold on to fluid more than other kids as well.

So, that's the scoop. The good news is that he seems to be feeling much better today, we're back to getting regular smiles and his energy seems to be picking up. His ears also looked really good, so the Amoxicillan is doing the trick with that infection.

Prayer request would be specifically that the oral Lasix would get rid of the fluid in his right lung and he would not need any more aggressive treatment.

Saturday, October 20, 2007

Prayer request

We've been home and doing really well for a month and a half now, but Luke seems to have caught the cold bug going around and it seems to be hanging on. We took him to the doctor yesterday and it looks like he has an ear infection as well. He is pretty miserable and we are praying the Amoxicillin begins to fight the infection quickly. Please pray that Luke begins to feel better soon and there wouldn't be any complications with this bug he's got. With the heart surgeries, we knew his discomfort had a purpose and we had lots of medical support ... although this cold is much less serious, it's tough to feel like there's very little we can do to make him feel better. Thank you for your prayers!

Friday, September 7, 2007

Home sweet home

We were discharged yesterday morning from Children's and made it home safely around noon yesterday. How good to be home! Luke is doing wonderful — happy and healthy.

We have follow-up appointments set up next week with his cardiologist, as well as his pediatrician and dietician.

Here's a picture of Luke in his own jammies last night, ready to go to sleep in his own crib. I think he's happy to be home too.

Thursday, September 6, 2007

We're going home!

We just got the thumbs up to go home this morning! Dr. Cohen looked at his chest x-ray, which was clear, looked at Luke and said with a smile on his face, "I'll see you in 8 kilo's." (That will put Luke at 30 pounds, where he needs to be for the Fontan, his final heart surgery.) We are now just waiting for our discharge papers and then we are OUTTA here!

We are sad to leave our new friends and some of our nurses, but couldn't be happier about getting Mr. Luke home — just in time for the Puyallup Fair =)

Our favorite Nurse Practitioner, Lara

Our favorite friend on the floor, Maddie

Our favorite place to be going, home

Friday, August 31, 2007

One amazing boy

Another scar, another day

Luke is doing well and sleeping soundly after his diaphragm surgery last night. It amazes me what this kid has to battle through and he does it with a smile on his face. Yesterday, he had to stop eating around noon and he wasn't taken back to surgery until 8:30 p.m. I am truly not exaggerating when I say he was giving us big smiles even up to the point we had to hand him over to the anesthesiologists.

Grandma Janis helping us move
our wagon of stuff from our room
on the Giraffe
Floor out to our R.V.
while Luke recovers
in the I.C.U.

It was a late night as we didn't get to see him again until 10:30 p.m. But he looked great and the surgery went without a hitch. He came out of the O.R. and stayed the night in ICU, but the plan is to move him back to the floor later today. He is currently on morphine, but they are switching him to a little bit less strong pain medication called Toradol. He is going to be pretty sore for a few days since the incision in his side is through layers of muscle. Poor guy, he was well on his way to healing from his chest incision! He also has a new chest tube in for any drainage, but not much has been draining, which is good. He has had a few small bottles overnight, so overall really good news. He is also on no oxygen this morning and his sat's are in the low 80's. That's already higher than we've seen since surgery.

Prayer requests would be for minimal discomfort for Luke over the next few days, also that he would continue to eat and that there would be no secondary complications from this surgery.

Wednesday, August 29, 2007

Our journey at Children's continues

So we are still at Children's ... and possibly heading into another surgery tomorrow afternoon.

Thankfully, Luke's heart is doing great, but they have discovered that his left diaphragm is paradoxical. What that means is that it is working in the opposite direction it's supposed to. When it's supposed to be expanding and opening, it's contracting and vice versa. In a baby, and especially a baby who just had the Glenn operation, this can interfere with his lung capacity. That is why they are thinking his saturation levels haven't come up to where they'd like them to be. Over the weekend, they were thinking it was the fluid perfusion in his lung, but are now leaning towards this diaphragm abnormality to be the cause of his lower sat's.

So, what does this mean? There is a procedure they can do called a diaphragm plication, where they surgically go through Luke's side and put a series of stitches into Luke's diaphragm to cause it to lay flat and not work against his left lung. They are going to do one more study this afternoon to get an even better look at the way Luke's diaphragm is working and from there make the decision to operate or not. If they decide to, it would be tomorrow around 5 p.m. It's a fairly quick procedure, but one where Luke would have to go under anesthesia again, and probably stay one night in the ICU to be monitored. It would probably keep us here an extra four or five days for recovery.

Rog and I are kind of numb to the idea of another surgery, which is probably a blessing from God. We trust the doctors here implicitly and they have been conferring with our cardiologist in Tacoma as well. I know they will only do this surgery if they truly believe it will help Luke in the long run. It definitely feels like a huge step backwards, but again are finding thankfulness in that they can diagnose and fix issues like this.

I will let you know what they find out in the test this afternoon. Please pray that Luke's diaphragm would actually be working correctly and the God would give the doctors perfect wisdom in their decision-making.

Tuesday, August 28, 2007

Storms in the Desert - a Devotional

This devotional was sent to me by my dear friend Erica today and brought much-needed encouragement. I wanted to share it with you.

I once visited the testing room of a large steel mill. I was surrounded by instruments and equipment that tested pieces of steel to their limits and measured their breaking point. Some pieces had been twisted until they broke, and then were labeled with the level of pressure they could withstand. Some had been stretched to their breaking point, with their level of strength also noted. Others had been compressed to their crushing point and measured. Because of the testing, the manager of the mill knew exactly how much stress and strain each piece of steel could endure if it was used to build a ship, building, or bridge.

It is often much the same with God’s children, He does not want us to be like fragile vases of glass or porcelain. He wants us to be like these toughened pieces of steel, able to endure twisting and crushing pressure to the utmost without collapse.

God does not want us to be like greenhouse plants, which are sheltered from rough weather, but like storm-beaten oaks; of wind but like granite mountains that withstand the fiercest storms. Yet to accomplish this, He must take us into His testing room of suffering. And many of us need no other argument than our own experiences to prove that suffering is indeed God’s testing room of faith.

It is quite easy for us to talk and to theorize about faith, but God often puts us into His crucible of affliction to test the purity of our gold and to separate the dross from the metal. How happy we are if the hurricanes that blow across life’s raging sea have the effect of making Jesus more precious to us! It is better to weather the storm with Christ than to sail smooth waters without Him.

What if God could not manage to mature your life without suffering?

Sunday, August 26, 2007

Luke enjoying his time at Children's too much

Luke has decided he's not quite ready to go home yet, much to his parents' disappointment! Yesterday, Luke's chest x-ray showed a little fluid pocket in the left lung and his saturation levels would dip below comfort level, so they ordered another x-ray this morning. Thankfully, it looks a little better than yesterday, so they are just giving him a couple of doses of Lasix through an IV (which is more effective than an oral dose) instead of having to insert a new drainage tube (which they were going to do if his x-ray didn't improve from yesterday).

It's been a bit of a tough morning since he's had to have an IV put back in and his oxygen is back on, but we are praising the Lord that the fluid is less than yesterday. We are praying that the Lasix does the trick and that we will be back on track to get home this week. They were confident we'd be home tomorrow, so we're definitely feeling some disappointment this morning. It's also hard to see things going back ON Luke at this point, since he was pretty much free from all his wires for a couple days.

The other thing we're thankful for is that they caught this before we got home. It would have been much tougher to have to come back to the hospital rather than extend our stay a couple days. Please pray that Luke's lungs clear up quickly and that we would be on our way home!

Luke continues to have a joyful spirit through all this, and is making friends all over the floor =)

Friday, August 24, 2007

Luke update - doing great!

A big step ... Luke's oxygen was turned off as of last night and he did really well keeping his sats up through the night. We are excited to have one more thing removed! Also they're going to take out his pacemaker wires this morning, so he will be totally free except for a couple monitors! They are going to also take out his chest tube sutures and give him a bath ... he needs it!

They are hopeful to get us home this weekend, which would be amazing!

He has been so happy, and has loved his walks through the hospital Rog and I take him on. He is back to his old self, smiling and flirting at everyone passing by!

The more we're here at Children's the more we give thanks for this place. It truly is an amazing hospital, not just the cardiothoracic staff (which we're finding out is world-renowned) but the family-friendly environment.

Thank you for your continued prayers for healing for Luke, they are the biggest gifts you could give our family.

Tuesday, August 21, 2007

Movin' out of the ICU

We are out of the ICU as of today and onto the surgical recovery floor! After an EKG this morning, they saw that Luke's heart rhythm is back to where it should be! Our nurse, Kim, even did a "p-wave dance" in celebration! We now are praying it stays in sinus rhythm. So, it looks like Luke won't be needing a pacemaker at this time. Thank you for your prayers! God is so faithful.

Grandma Janis bought Luke his giraffe
when he graduated to the Giraffe Floor!

The move happened really quickly. We were again sharing a room in the ICU with a pretty critical case, a girl waiting for a transplant, and there was often a lot of stressful commotion on her half of the room. Our heart aches for that little girl and her family, and I'm sure the staff here were anxious to remove us from her tough situation. So, we said good-bye to our doctors and nurses and made the trip to Giraffe Floor 4. The move to the floor, although one step closer to home, means a change from 1 nurse: 1 patient care to 1 nurse: 3 patients care. Needless to say, this change can come with some new challenges.

Our next and last hurdle (hopefully) is getting Luke off his oxygen. We're not sure how long that will take, and that will determine how long we're here. But our room on the floor is much more spacious with big windows and a nice view, so that's all really nice.

Another huge blessing today is how much better Luke is feeling. He is so much more like himself again. We're not sure if that's because his heart rhythm has changed, or he is just daily feeling better. He is playful and smiley, babbling again ... it's so nice!

We give thanks to the Lord for a great day!

Monday, August 20, 2007

One week post-surgery

We are still at Children's and still in the ICU. The top part of Luke's heart is being slow to "wake up" and so he is still being paced by a pacemaker. They have just turned it off this morning to get a better idea of what his intrinsic heart rhythm is. It's kind of confusing, but basically there is a node in the atria (the top chambers of your heart) and a node in the ventricles (the bottom chambers) that both receive electrical impulses which make the chambers contract. If the sinus node (the one in the top) doesn't fire, the lower one takes over. That's called a junctional rhythm, which is where Luke is at. They want to see a sinus rhythm, where the top node in the atria dictate the heart rate. If that doesn't make any sense, it doesn't surprise me =) Who would have ever thought Rog and my vocab would include such terms??

In the short term, this means we have to stay here until 1) his sinus node starts working again, 2) his heart rate without the sinus node firing is high enough for the meantime, or 3) they decide Luke needs a permanent pacemaker put in. They've seen it take several weeks for that sinus node to become active again after such a major surgery. A lot of times, the heart tissue is swollen and can cause the inactivity.

Watch out. Nurse Kim is on a
mission to kill that thrush!

Luke with his purple-stained
mouth from thrush treatment

Luke also developed thrush yesterday from all the antibiotics he was on, so we think he's pretty miserable with that, along with not really wanting the bottle (we think it may bother his tongue?). This really is the hardest part of recovery. As a mom, you just don't want your baby to be miserable, and he is really miserable. It seems like every time he finally falls asleep, it's time for his next medicine or his vitals need to be taken. I just want to take him home. I know we'll get there, but it's tough.

Other than that, Luke is doing really well. Good blood pressure and sats, no fever, etc. We did get a few smiles out of him yesterday and today, so that was a huge blessing. And we brought his Baby Einstein DVD and that seems to help distract him for a little while =).

Please pray for Luke's heart to get back into a good strong rhythm and that he would not need a pacemaker. Please also continue to pray for his comfort level. Thank you all for your thoughts and prayers!

Friday, August 17, 2007

Day 5

Luke is doing fairly well ... this is the hardest part of recovery ... he is awake enough to be uncomfortable, but not well enough to be mobile yet. Although I did get to hold him a bit yesterday (a big production with all those wires and tubes!) You can just tell it is hard for him to get comfortable. He can't open his eyes very much since he is so swollen, but he's hanging in there. He gets all the grace in the world for being grumpy.

They removed all three of his chest tubes yesterday, so that was great. His lungs are sounding clearer, too. They are working today to get him to "diurese" which basically means they want him to let go of the fluid he's retaining, in his lungs and head. So we're celebrating his wet diapers! He is still on supplemental oxygen and the pacemaker wires to control his heart rate (it's too low on its own right now).

Luke is eating well from the bottle, which is a great thing and Rog and I are doing our best to keep him comfortable and to keep his busy hands away from his IV's.

Please pray that he would be able to rest well today and that God would take away any discomfort he's experiencing. It's going to be a tough couple days for him, but hopefully he'll be feeling much better by the weekend. They are guesstimating Monday we may move out of the ICU.

Wednesday, August 15, 2007

Luke's breathing tube is out!

They lowered his sedation medications when they extubated him, but increased them again an hour or so ago since he was NOT a happy camper. He was so hungry! They are waiting until this evening to feed him, so it's good he's relaxed again.

The breathing tube came out much quicker than the docs anticipated, so we are very thankful! Hopefully our little man will get a nice bottle tonight =)

Day 3

Luke continues to do well and is making good progress through his recovery process. They weaned him off his nitric oxide overnight and he did just great with that. They are hoping to take out the breathing tube later today since he no longer needs the nitric oxide. That's definitely a big step for him.

They gave him some donor blood this morning since he drained quite a bit last night, but nothing the docs are concerned about. Once he received the blood, his saturation levels went up and he pinkened up quite a bit. Also, his chest tubes (he has three) have really slowed down and are not putting out hardly anything, which is another good sign. The doctors are really pleased with how he's doing! His heart is being paced with a temporary pacemaker, but they think once they let him wake up a bit more, his heart rate should go up on it's own. They are keeping him pretty sedated with the breathing tube still in, but hopefully later today they'll let him wake up a bit more. It's even possible he can have a bottle tonight or tomorrow morning. I know he will like that!

Rog and I are doing well ... we got a good night's sleep last night in the hotel down the street and are mostly hanging out in Luke's ICU room. Luke did get a roommate yesterday so it's been a blessing to connect with another family going through heart surgery! This little boy is only 5 months old and it's his first open-heart surgery, so Luke is showing him the ropes =)

Please pray for continued progress and no complications!!!

Monday, August 13, 2007

Post-Glenn pictures

6:45 am the morning of surgery, waiting to take Luke back to anesthesia

Sweet, brave boy

Our wonderful nurse, Carlotta. She cared for Luke right after his first surgery as well. God is good!

Luke's I.V. tree

3 chest tubes, ventilator, arterial line, 2 IV's, pacemaker wires, multiple monitors

Surgery is over!

After a long wait, Rog and I have been able to see Luke in the cardiac ICU. His surgery went really well and Dr. Cohen was very positive about it. Luke is still completely sedated and breathing with the ventilator. He is also starting to swell like a little pumpkin. But, again, he tried to fight his way out of sedation too soon and the nurse had to give him more morphine. I love that about him!

We are thankful the surgery is over, but would ask for continued prayer for strength for what's to come.

Thank you! I'll continue to keep you posted. I appreciate all of you!!!

Thursday, August 9, 2007

New Glenn date

Luke's bi-directional Glenn has been reschedule for Monday, August 13, first case of the day.

Wow, that feels a long way off, but Rog and I are trying to stay busy (and positive!) It helped when we found out Luke got bumped because Dr. Cohen got called in for a heart transplant. We were definitely rejoicing with the family who's baby gets a new heart!

So, now we're in the waiting mode again (and UNpacking mode), but I believe God is in everything, even in the details of when Luke goes in for surgery.

Rog and I will be driving up to Seattle on Sunday night to stay so we can avoid any I-5 craziness on Monday morning. Luke's surgery is at 8am, so we will be checking him in at 6:45am.

We'll keep you updated!

Wednesday, August 8, 2007

Surgery rescheduled

We got a call at midnight last night from Children's and Dr. Cohen had an emergency case and needed to bump Luke. So we are waiting to hear when is new surgery date is. Rog and I are doing okay, it's a little disappointing, but overall we feel really peaceful. We wanted to let all of you know who are praying and thinking of us!!! I'll keep you posted...

Sunday, August 5, 2007

Pre-Op for the Glenn

We had a great day up at Children's on Friday for Luke's pre-op appointments. Everything went smoothly and we are set to head up there Wednesday morning for Luke's surgery. (They bumped us from the 7th to the 8th because of a newborn who needs the slot on Tuesday). We had a great consultation with Dr. Cohen (the surgeon) and feel much more prepared for surgery #2 and came away with some specific prayer requests! He really does think Luke will do great, but this is a tough surgery, probably the toughest of the three. Not necessarily a tough procedure for the surgeon, but a huge physiological change for Luke ... he will have to work hard to adapt to his new physiology. That's why recovery can be pretty tough coming out of this surgery. We are looking at 4-6 days in the ICU, and much of that on the ventilator. Also, we have been prepared for Luke to be really swollen and uncomfortable for several days. Dr. Cohen assures us it will go away, but he will definitely not look like Luke for a little while. It's a tough balance, because they want to keep him as comfortable as possible, but they also don't want him completely sedated because the sooner he starts breathing on his own again, the better. So, although we are ready and know that God's faithfulness and sovereignty are complete, we are definitely anxious and would covet your prayers. Here are some specific requests:

  • Please pray for Dr. Cohen, for his health and safety leading up to the surgery and for a steady hand and focused mind. Mostly for God to guide him as he operates on Luke.
  • Prayer for Luke's recovery - that he would come of the breathing tube as quickly as possible; that there would be no infections or complications that would keep us in the hospital; that he would be comfortable; for Rog and my strength and endurance
  • There is a small, small chance that post-surgery, Luke's pressures in his heart and saturation levels would not be where they need to be and they would have to go back in and adjust some things. Please pray that this Glenn procedure would take perfectly!
  • Please pray for wisdom for all the nurses and doctors who come in contact with Luke
We got to see a few familiar faces up at Children's on Friday, and were reminded how thankful we are for that hospital. We know we are in the best hands!

Rog and I thank you so much for your support and prayers and we will definitely keep you posted on Luke's recovery. We look forward to the day we are back at home, but between now and then we praise God that He will be walking us through!

Sunday, April 1, 2007

Home from Children's

After 28 nights in two different hospitals, it felt really good to be home. Luke has only spent 3 of his 8 weeks at home! Leaving the hospital, Rog and I experienced mixed emotions. Excitement and relief to be free from bells and buzzers and tubes and wires, but apprehension about managing Luke's care without the help of such wonderful doctors and nurses. We have been trained on how to run Luke's feeding pump, check placement of his NG tube, give medicine and so on, but it is still a little daunting to be on our own. I know that each day will bring more confidence for us to care for this amazing little boy.

Since Luke developed reflux, we also came home with a wedge for him to sleep and feed on. Although he looks a little silly in his wedge, if it keeps the food down, we love it! Our plan is to alternately breastfeed Luke and feed him through his NG tube. He will get a 30 calorie per ounce formula through his tube (breast milk is only 20 calories/ounce).

We started with a syringe pump (used most commonly for IV medication) and he started with getting 50 cc's over a 1 hour period. That's not even 2 ounces and it was hit or miss whether he could keep it down. We watched that syringe empty and prayed that Luke's stomach would hold it. Before and after surgery he had such a hard time putting on ounces. We had rented a hospital scale, so were daily monitoring his progress, or lack thereof. Coming home from the hospital at the beginning of March, Luke weighed in at 6 pounds 12 ounces and it took two weeks for that scale to move upwards at all.

At our first follow-up appointment with Dr. Stefanelli, he convinced us to rent a different pump that could hold more formula and could be programmed for a longer period of time. He really wanted us to stop doing 3 individual feedings through the night and instead give Luke a continuous drip for 10 hours overnight. This would give him the maximum amount of calories, but more important, us all some decent sleep. This new Infinity pump changed everything! With being fed all night, Luke slowly started gaining weight and we didn't have to change the pump out while we were stumbling around in the middle of the night. We propped Luke in his wedge in between us as we slept and Luke slept soundly all night. Rog and I only woke up if the hose got kinked and the pump's alarm went off. Thank you, Dr. S.!!! You are so wise =)

As much as we would have loved to bring Luke home without a feeding tube, it really was a blessing in several ways. One, the sleep factor as I mentioned; two, it was much easier to administer ALL his medication. We could give him his meds through the tube while he was sleeping. He came home on 8 medications (Diuril, Lasix, Reglan, Zantac, Simethicone, Spironolactone, Captopril and Tylenol), so the tube was definitely our friend! The third blessing we experienced (and me especially as the breastfeeding Mom) was the pressure-reliever of knowing he was going to get all his calories, whether he breastfed well or not. I can't say that I simply enjoyed our feeding time together, I did watch the clock and I did worry if he didn't eat very long, but those feelings were definitely softened by knowing he would get enough through the tube.

Roger took another full week off of school when we got home, to help me and Luke get into a rhythm of our days. (Small sidenote: My husband is the most incredible partner. Thank you, Lord, for the gift of a devoted, hands-on, strong, faithful husband.) We didn't go very far when we got home, the Starbucks drive-thru was pretty much the extent of our family outings. =) We were vigilant about keeping Luke healthy post-surgery and pretty much hunkered down besides our doctor's appointments in Tacoma. We didn't mind too much, though. We were home.

Sunday, February 25, 2007

My first smile

Luke gave us his first smile yesterday! And we managed to get one on camera this morning. He's doing great. He is off his oxygen and heart monitors (which means much less dinging and a much happier mommy and daddy ... those things can start to make you crazy!) He still has a bit of fluid in his lungs, but they are trying to flush that out by upping his dose of diuretics. Hopefully in the next few days that will clear. He is still breathing a bit fast, but that is because of the extra fluid in his lungs.

Dr. Cohen, our surgeon, stopped by yesterday and again this morning and was so positive. He feels like Luke is really moving through this process well. He reminded us that this IS a process and we need to remember that Luke's physiology completely changed last week and it takes a little time for everything to balance out.

I can't tell you how much your prayers mean to Rog and me.

Friday, February 23, 2007

Tough cookie - 8 days post surgery

Luke wanted you all to see his "war wound". His incision is looking great. The small incision above his belly button is where his chest tube was. You can see he's still on a tiny amount of oxygen and a few monitors. He still also has an I.V. in his foot, although they aren't using that right now. They just like to have it just in case.

This morning's chest x-ray showed a bit more fluid than yesterday, so they have put Luke back on this formula called Portagen. It's basically a non-fat solution, all protein and carbs, which helps reduce any accumulation of fluid from the lymph system. It supposedly tastes horrible and most kids won't take it, but Luke is eating it like a champ.

Please pray that Luke doesn't need another drainage tube put back in (he would if there's not improvement after switching to the portegen). Please also pray that he would come off the oxygen in the next couple days. Rog and I are doing pretty good, we have our ups and downs, but God is so faithful to comfort us and give us strength. As great as it would be to be home, I've come to realize it doesn't really matter where I am because I'm with Luke! I'm sure he's anxious to get home and have the nurses stop bugging him! =)

Thursday, February 15, 2007


God is SO good and SO faithful. We had a true miracle today. Last night, the surgeon came in to talk to us about the procedure today. He thought that after looking at the latest echocardiogram that Luke would actually need a more complicated and risky surgery, called the Norwood, instead of the D.K.S. we originally thought he would have. They are very similar, but the Norwood just is a bit more difficult to recover from. Well, Luke went in to surgery about 7:30 this morning and they give you a pager for updates. At around 10:30, we got a page that Dr. Cohen wanted to talk to us. That was an incredibly scary walk downstairs! We had no idea what he needed to talk to us about. It's so incredible ... once Dr. Cohen actually was able to see Luke's heart, he didn't think Luke needed the Norwood or the DKS, but a much simpler procedure called the pulmonary artery band. Basically, he put a gortex band around Luke's pulmonary artery, to restrict the blood flow to Luke's lungs. He said he'd be done within an hour, and Luke would now only need to be on the heart-lung bypass machine for 5 minutes. Plus the recovery time is much shorter. He thought we'd be home within a few days to a week. We are praising the Lord. There were about 8 of us last night praying in Luke's room, around his hospital crib, for a miracle and God answered.

Luke will still need his other surgeries, but this is such a good good thing. I am so thankful today for everyone who has been praying for us and loving us through this. I will keep you posted on any Luke updates. He is so amazing. Here is Luke in a nutshell: Almost as soon as they got him to the I.C.U. post-surgery, he started fighting his way out of anesthesia. They actually had to up his medication so he wouldn't wiggle so much! He is a true fighter with a strong will that we absolutely love!

Thank you again everyone. Please continue to pray for his quick recovery. They are thinking they'll be able to take the chest tube and breathing tube out tomorrow. He's already breathing again on his own, but they are regulating his breath with the breathing tube. His incision also looks really good. He will never have a boring show-and-tell, that's for sure!

Thursday, January 11, 2007

First Photos!

Very intellectual from the start, as you can see ...

My first good nap since being born!
Proud Daddy if I ever saw one ...
Hangin' out with Dad in the NICU

Tuesday, January 9, 2007

Luke's here!

Email sent from Jesse's sister announcing the arrival of Luke:

I wanted to let you know that the unbearably gorgeous Luke Scott Smith joined our family today at 12:14pm. He weighed in at 7 lbs. 4 oz. and measured 20 1/2 inches - a big boy for my tiny little sis! This, coupled with the fact that the medical personnel were being extra careful because of Luke's heart condition, he required some suction to make his way out a bit faster. Jesse handled every moment with grace and determination.

Right after birth, Luke was able to spend a few minutes with his mommy and daddy, then he was taken down to the neo-natal ICU for tests and monitoring. Every piece of news that came out was encouraging: strong heart rate, steady breathing, good coloring, and when it came time to feed, he took to the breast like a champ!

Jes will be recovering in the hospital for the next day or so, and Luke will have to stay for two or three days before any determination is made about the timing of his first surgery. If all continues to go well, he'll be able to come home for a few weeks (or more!) before any major procedure is done. We're hoping...

In all the excitement, my mom left the camera with all the great pictures on it at the hospital. I'll send a few along as soon as I can. Y'all have to see Luke. He's gonna be a heartbreaker.

Lots of love,
Aunt Jenny