Life is Good

Blake went to the cardiologist yesterday, and after a 3-hour appointment, we are happy to say everything looks great. So much so in fact, his cardiologist called us this morning and said after reviewing his echo cardiogram in further detail, his heart looks fantastic and he is very pleased with his progress. We couldn't ask for better news. We do not have to see the cardiologist again for another month now. We can tell Blake is getting stronger too. He is starting to wake himself for feedings, and he is tolerating more milk per eating session. All in all, life at home seems to be agreeing with him.

We're Home!

We really enjoyed our first weekend home together as a family. Mason is in love with her baby brother. She likes to sit next to him and giggle when he makes noises. She is especially eager to help give him a bottle or to let us know when he is crying. Blake is continuing to do remarkably well. He's adjusting famously to his (chaotic) life at home, and, like his mom, doesn't seem to miss the beeps of the hospital monitors or nurses and doctors coming in every hour. He is eating great, and had his first pediatrician appointment today - he has grown 2 inches (now 20") and has gained a pound (now 6 lbs. 5 oz.) since birth. Tomorrow we go for his first follow up with his Austin cardiologist to check on the state of his heart.

I'm Outta Here!

Great news! We are being released today! We couldn't be more excited to be going home. Our early release has everything to do with what a rockstar baby Blake is.

We are proud to say this first gruelling part of our journey is over. Although we still have a long road ahead of us, and two more surgeries to go, we know we can get through it with God's graciousness, the love and support of our family and friends, and Blake's strength and determination.

Look Ma, No Wires

The first time since he was hours old, Blake has no more wires,
cords, or tubes on his face.

We're Going Home!

Today we got the great news that we get to go home. Not to another hospital, but home! We couldn't be happier.

Blake has been taking all of his feedings (that's right 100% of them) by mouth since last night, so they are taking his nasal feeding tube out today, and as long as he keeps up the good work, we will get to go home by Friday.

God has really answered our prayers, and allowed Blake to get stronger and healthier every day. We feel so blessed at the remarkable progress he has made, and how he continues to prove his doubters wrong! This is the absolute BEST birthday present Tiffany could ever ask for.

Getting Stronger

A Great Day of Progress

Blake is making great progress with his feedings. The doctors approved him to attempt all of his feedings by mouth today, and he has been exceeding our expectations. He took over 80% of every bottle by mouth, and even completely finished two bottles. This is a huge step in getting home! All the extra work is making him extra sleepy, so between feedings, most of the day has been spent by Blake sleeping or getting all of his necessary discharge tests. Blake is also gaining weight like a champ. He is over 6 lbs. now (he was 5 lbs. 5 oz. when he was born). Considering that he didn't eat for a week and a half, and has undergone open heart surgery, that's pretty amazing. Today is Blake's three-week birthday, and we continue to be overwhelmed by his strength.

Every Day is an Adventure

Every day we spend in the hospital seems like a new adventure because every day is filled with twists and turns, excitement and uncertainty; today was no different. Blake is doing amazingly well after his heart surgery, and the doctors couldn't be more pleased with his progress. But, we have been increasingly frustrated by the delay in getting all the doctors organized around the scheduling of Blake's feeding tube surgery. But, this delay may turn out to be a blessing.

I am very pleased to say that Blake is doing fantastic and has made a lot of progress on his feedings over the weekend and today. So much progress in fact, his team of doctors is starting to question the need to surgically insert a feeding tube. On Friday he was barely taking 1 feeding by mouth (and he would only take about 25%), and today he took 4 of his 8 feedings by mouth (and he took 75% +). They think that if he keeps progressing this well, he could be taking all of his feedings by mouth very soon which would negate the need for a feeding tube at all. This is very exciting news because of course we would like nothing more than for him to eat on his own, however it also adds more uncertainty (for those of you who know Tiffany, you know how much she hates uncertainty). If we continue down this road, the next milestone (and the final one for this first surgical phase) is Blake taking all of his feedings by mouth, then we get to go home. Because we can't predict exactly how long that will take we can't predict exactly how long we will be here.

Once again, it is a day by day journey, and we have to wait and see what tomorrow brings. We are keeping our faith that everything is happening for a reason, and God is listening to our prayers. Thanks for continuing to think about us and for every body's kind messages and prayers.

Just Another Day in the Hospital

Today was an uneventful day at TCH. We (Bryan, Blake, & Tiffany) just hung out before Bryan and Mason head back to Austin. We did get to meet with Dr. Wesson (Chief of Pediatric Surgery), who will be performing Blake's feeding tube insertion surgery. We still feel this is the best thing to do for him to be able to gain weight quickly and safely while we continue to work on his bottle feedings at home. Unfortunately, the surgery will not be until Tuesday or Wednesday due to the busy surgery schedule, so we will continue to have to wait another couple of days. The surgery is only an hour, and is not very complex. However, because of Blake's heart condition, they like to do the surgery at TCH to keep close reign on the anesthesia. They say the recovery typically lasts 3-4 days, so God willing, maybe we will be back home next weekend.

Mason Meets Blake

Two Steps Forward, One Step Back

Yesterday, Blake had a swallow test to see if he was aspirating when feeding from a bottle. The test confirmed that he had some slight aspiration. When we met with the team of surgeons, cardiologists, and therapists today to discuss next steps, they recommended inserting a gastric tube (G-Tube) into his stomach to assist with feeding. There are many reasons for this: safer than a nasogastric tube (NG-Tube) (which is his primary source of food now), allows nourishment since he is still very little and needs to gain some weight, and it will allow us to continue working on the bottle feedings safely with an occupational therapist while putting food directly into his belly via the tube.

After the surgery it will be several days to recover we are told and then we will likely be released to go home at the end of next week. The team of doctors are very conservative when it comes to releasing babies that have had HLHS surgery (Norwood procedure) especially if they are out-of-towners. They are thrilled with how quickly Blake has recovered from the actual heart surgery, but we just need to get through another obstacle before they are confident with letting us go home. We are trying to get the surgery scheduled for Monday so we can potentially be released at the end of next week. We will be meeting with the surgeon tomorrow to get the specifics and decide when it can be done.

This is obviously very disappointing to us as we had heard we were making such remarkable progress, it really felt like a huge blow out of nowhere. What is most important to us now is getting our family back together in one place in the healthiest, quickest way possible; we believe this feeding tube will allow us to do just that instead of spending the next month (or more) in the hospital working on safely taking 100% of feedings from a bottle.

The good part of today was that we got to introduce Blake to his big sister, Mason. She was so happy to finally get to see her little brother she has only seen pictures of. She immediately recognized him, called him by name, and ran over to give him a hug. She was very sweet and wanted Blake (pronounced by Mason as Bic-e) to see all of her books and play with her bunny.

Once again, we ask that all of you keep Blake in your thoughts and prayers.

Another Day in Recovery

Blake spent another day chilling in Houston recovering. Everything from his surgery looks good, he is just having some preemie issues. He is still breathing a little fast and he is aspirating a little when he takes food from a bottle. All of these things can be overcome, but they might be minor setbacks in our return home. Dr. Fraser did say he is comfortable with us going to Austin early next week, but he thinks he would like us to go to Dell Children's for awhile before going home. We are trying not to be disappointed and focus instead on the amazing progress Blake is making. He is a happy and sweet baby and an absolute joy to be around. We can't wait until Mason gets to meet him and we all get to be a family again.

Recovery Day 2

Blake is doing great in recovery; all his vitals are very stable. We have been staying with him and spending a lot of time cuddling, which has been fantastic. Tiffany is getting to experience all of the joys of a typical newborn including a dozen diaper changes a night, and Blake confusing night for day. As tiring as it is, these inconveniences are a welcome blessing. Blake also started taking a couple of feedings from a bottle today like a champ. He is proving to be like his Dad because he's hungry all the time! Tomorrow, Blake's surgeon, Dr. Fraser, will examine him and give his determination for the rest of his recovery. Keep your fingers crossed that Austin is in our future.

Blake is in recovery!

We got moved to the recovery floor today. Which means that one of us will stay with Blake at all times and take care of him with the assistance of nurses. This is a really exciting day, and a fantastic way to celebrate Blake's two-week birthday!

The doctors also agreed they are comfortable releasing us back to Austin, but his surgeon wants to see him again before giving the final ok, and he's on vacation until Thursday. So, that means we're in Houston until then and they hope to release us home instead of to Dell Children's which would be wonderful.

Everything is going as well as we could hope, we are truly blessed.

Day 7 Update

Blake is almost completely wire-free and is moving to a crib today. All this freedom means we can pick him up and hold him whenever we want. He had his throat checked out and he has no damage to his vocal chords from the ventilator. An occupational therapist will work with us tomorrow to get him feeding from a bottle. He also has an MRI at 5 am tomorrow and a neurological evaluation, this will be the last tests for his clinical trial until his second surgery.

They are still discussing possible transport to Austin, but if that isn't granted we will be moved to the room-in floor either Tuesday or Wednesday. He really couldn't be doing any better. All of your thoughts and prayers have allowed us to be at this amazing point - thank you.

Happy Mother's Day

My first time to hold him since before his surgery!

Day 6 Update

Blake is really doing great. He is acting like a real baby now, telling us when he's hungry and dirty, we never thought it would be so fantastic to hear him cry for normal baby reasons. He really is a blessing and the best mother's day gift I could ask for.

Day 5 Final Update

Blake is off the ventilator and is breathing on his own. His cardiologist said he's the rockstar of the day. It is so good to see his little face again and to see him be so active and alert. We could not be more pleased with his progress.

Day 5 Update

Blake is doing fantastic! He has been hitting every milestone like a champ. He is taking his feedings (although small) very well, and they have reduced his ventilator to the lowest possible setting. They plan on removing the ventilator completely tonight. After that, they will watch him closely for the next couple of days just to be sure his breathing is normal and stable without assistance.

All of the sensors and monitors were removed from his head last night, so he finally looks like our strapping son once again. He is definately a blonde which is the complete opposite of his sister at this age. Blake is a strong little man, and we are proud of him for fighting so hard.

The cardiologist on call today said he would discuss with the full team on Monday if they would consider transporting him back to Austin (via Dell Children's Hospital) next week so we could be home while we are working on his feeding and building his strength. We don't want to get our hopes up, but it would be wonderful to be back home.

Day 4 - Great Progress

We just met with one of the cardiologists and he was very positive about Blake's progress. He said they hope to extubate (remove his ventilator) either Saturday night or Sunday morning. This is the first step to getting him out of ICU. If all goes well with his feedings, they plan on moving him to the 15th floor (where Tiffany will be staying with him around the clock) on Tues or Wed. This is the last phase before they let him go home. Of course this is all tentative based on how he responds to a number of factors, but this is very swift progress and we couldn't be happier.

Day 4 Update

Blake had another good night and so far another good day. They have removed his drainage tubes from his chest (Bryan says he looks like he got shot) and they are going to start feeding him this afternoon. He will also get all of the sensors removed from his little head tonight so he will look like my handsome baby boy again. Next step is to reduce the ventilator so it is just supporting his breathing instead of breathing for him. They hope to do that tonight. We feel so lucky that everything has gone as well as it has so far. Please keep baby Blake in your prayers.

Day 3 Final Update

Blake has had a great day. They are lowering the rate of his respirator to stimulate his own breathing rate. He seems to be responding well and starting to take his own breaths. They hope
tomorrow to turn it down to the lowest level in an effort to take the ventilator off completely.

His cardiologist came by and told us everything looked great and we were almost out of the woods. Our boy is a fighter and he is doing so well.

We also got to meet little Henry Johnston, a handsome 14-month old boy, who has undergone 2 of the 3 surgeries for HLHS. He was such an inspiration to see what a healthy, happy, and normal kid he is.

Thanks again for everyone's well wishes.

Day 3 Starts

Blake had a great night and is very stable. His blood pressure is good, he is being removed from dialysis, and has good movement in his arms and legs. They removed the bandage on his incision, and it looks really good too. The cardiologists and surgeons are all very pleased with his recovery. They said there will be very few changes today as they are hoping to let him rest and recover during this stable period before making a whole lot of changes again. He will also start getting fed milk through a feeding tube tomorow so that we can start fattening him up and increasing his strength. Please keep praying - it's working!

Day 2 Final Update

Not much new to report except that Blake's fever has come down, and his little kidneys are starting to respond better. All in all, he had a really good day of recovery. We are excited to go spend time with him tomorrow. Although he is still fighting his way through he should be much more responsive in the morning. One day of recovery is behind us, and it was a great day!

Day 2 Update 2

Blake is doing great! They have reduced the amount of medicine to help his heart and stopped the sedation drips. They have also turned down the ventilator and he is breathing over it now, which is really fantastic. He is running a low fever that they say is very common so he'll just be getting plain old Tylenol for that. We couldn't be more pleased with how he's doing, but he's not out of the woods yet, please keep your prayers coming for our little angel.

Day 2 Starts

Blake had a very good night last night after such a complex surgery. He was given some more blood last night and had a dip in his blood pressure, but nothing at all uncommon. All the other numbers seem to be doing great. Today will be a day of rest not only for Blake, but for the rest of his family.

After meeting with the doctor administering the clinical trial Blake is on, we got a little more information about the results of the MRI. There appears to be some white matter in the brain that is out of place. The white matter is what affects your coordination and other motor skills. The gray matter which is your thought processing is normal. What this means is that he "might" get hit with the baseball in the face instead of on the bat a couple times before he knocks it out of the park, but if you know his mother you would know this is normal. The doctors will be trying to understand this more and more as they are a little unclear as to what it means as well. This can be a typical effect of pre-term babies we are told. He will have another MRI in a couple of days so we will see if there have been any changes at that time.

All in all we are very happy with how he is doing thus far and know that your prayers have brought him to this point and will give him the strength to finish this marathon, successfully.

Final Update for the Day

As with all major surgeries like the one Blake had there will always be some hurdles. They were able to complete the surgery to the heart relatively quickly, but Blake was bleeding a lot. The doctors were able to control it and close him up. His Norwood surgery went great and he has already started his long recovery.

The doctor did inform us that the results from his MRI prior to surgery came back not normal. This might not mean anything major, but what it does mean is that by doing the clinical trial they were able to identify this and start to resolve it and using it to their advantage in other stages of his recovery. These results allowed the surgeon to choose to do the Sano shunt. We will be meeting with the team of doctors tomorrow to go over the next steps regarding the MRI results.

The doctor is concerned about his weight as he is a tiny boy. They will start giving him some protein tomorrow to get him some nourishment. With this type of surgery feeding is a hard item to tackle as there are many organs that need to cooperate.

They will be monitoring him closely to see how everything reacts over the next couple days. As proved once again today, Blake is a fighter and will complete this marathon. Please continue to keep our little boy in your prayers.

Fourth Update

Great news! We just got the latest update that Blake is off of the bypass machine and his little heart is now working on its own. They said the surgery went as well as it possibly could have. All of his vital signs are looking good. The next couple of hours are going to be monitoring, inserting drainage lines, and reconstructing the incision. He should be moved into the cardio ICU after that. Please keep your prayers coming.

Third Update

We were just informed that Blake is doing great thus far. After creating the original shunt (Blalock shunt) to supply blood to the lungs and inspecting the anatomy of the heart the surgeon has decided to change their approach to the surgery. They will be creating a new shunt (Sano shunt) going from the pulmonary artery to the right ventricle and removing the original shunt. This was done to allow better flow of blood to the lungs. This will extend the surgery by a little we were told, but not by much.

Second Update

The nurse just gave us another update - 3 hours in. Blake is officially on the bypass machine and they have inserted a Gore-Tex shunt in his heart to supply blood flow to the lungs. It is a tiny 3mm tube. The surgeon is now inspecting the rest of the heart's anatomy to customize his surgery based on how the heart looks. We expect another update around 3pm.

First Update

The surgery began at 10:00 and we were just informed that the doctors have completed the prep work and started the surgery. All is going well thus far and God willing will continue to go well throughout the day. He is a strong little boy and is loved by many. We can't thank you all enough for the prayers being sent his way.

Alert and ready for my big day

Resting as he waits for surgery

Day before surgery

Today was a tough day on Bryan and I. Every minute it seemed a new doctor was coming to run a new series of preop tests. Everything looked normal and Blake rested comfortably throughout it all.

We decided to enroll him in a clinical trial intended to improve his neurological outcomes after surgery. As part of the trial he will get an MRI at 530am tomorrow before his surgery. The actual surgery will begin around 10am and can last from 6-10 hours.

Please keep Blake in your thoughts and prayers. The next 72 hours are the most critical of his little life. Bryan and I appreciate everyone's love and support more than you will ever know.

No news is good news

Blake had a low-key day today. He is stable, all his tests are good.
Just chilling waiting for surgery.

Oh, the drama. No more pictures, please.

Dad and Blake

Mom and Blake

Blake's Surgery Scheduled

Blake will be undergoing surgery Tuesday morning at Texas Children's. After meeting with Dr Nelson and Dr Fraser, we feel very confident in his team and know that it was absolutely the right decision to bring him here. Keep your prayers coming. Tuesday is a big day.

Bryan getting ready to donate blood for Blake's surgery.

Great news on Blake

We just got great news from Blake's doctors. After reviewing his tests they think he is one of the best candidates for the surgery and said because of his good valve development the surgery (although still difficult) will be easier on him than it is with most kids with the same condition. All in all they gave him a very good prognosis.

Please keep your prayers coming; they're helping.

Baby Blake Update - 05/02/08

As most of you know, William Blake Galligan joined our family at 6:10 AM on Tuesday, April 29. Born at 35 weeks, he is a beautiful and sweet boy and we are so lucky to welcome him to our family.

On April 30, Blake was diagnosed with a rare heart condition called Hypoplastic Left Heart Syndrome. This condition is very serious, and is going to require a series of 3 surgeries over the first 2 years of his life. We are very lucky that the doctors caught it so early. We decided that we wanted his surgery performed at Texas Children's Hospital in Houston because they are renowned for their successful treatment of this condition.

Today, May 2, Blake was transferred from Austin via Star Flight to TCH. We had been waiting to transfer him until Tiffany was released from the hospital. Bryan went to Houston last night to be there when Blake arrived, and Tiffany saw him off from Austin. The trip was a success, and he is now resting comfortably in the NICU waiting for another round of assessment from his new team of doctors.

We will keep you posted as we hear more. Everybody has been so kind and gracious; please keep praying for us. This little guy is a fighter and he has a lot of people in his corner, we appreciate your support.